action research in a qualitative study

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Chapter 7: Action Research

Darshini Ayton

Learning outcomes

Upon completion of this chapter, you should be able to:

• Explain the purpose of an action research approach.
• Explain the action research cycle.
• Describe action research characteristics.

What is action research?

The key concept in action research is change or action .

Action research (also known as ‘participatory action research’) aligns well with the practice of health and social care because researchers and practitioners in this discipline work with people and communities in holistic and relational ways to understand the history, culture and context of the setting. Action research aims to understand the setting and improve it through change or action. 1 This method has its roots in activism and advocacy and is focused on solutions. It is practical and deals with real-world problems and issues. Action research often undergoes phases in seeking to understand the problem, plan a solution, implement the solution and then reflect on or evaluate the solution, cyclically and iteratively. Action research is used in the practice of health and social care because it has two fundamental aims: to improve and to involve. This chapter outlines how this is evident, using examples from the research literature (see Table 7.1.).

Action research as involvement

Action research is a collaborative process between researchers and community members. This process is a core component of action research and represents a significant shift from typical research methods. Through action research, those who are being researched become the researchers, with close consideration given to power dynamics. The research participants become partners in the research and are involved in identifying and prioritising the research area, designing and undertaking data collection, conducting data analysis, and interpreting and disseminating the results. 1 The research partners may be provided with support and training to enable them to undertake these activities and to promote empowerment and capacity building (see examples following). Patient and public involvement in research and healthcare improvement (known in Australia as ‘consumer and community involvement’), has led to action research gaining popularity as a research design that captures the ‘living knowledge’ with, for and by people and communities throughout the research journey.

As an example, in the project Relationships Matter for Youth ‘Aging Out’ of Care, 2 Doucet and colleagues aimed to examine relationships that matter to young people in care and how these relationships can be nurtured and supported over time. The project is a collaborative participatory action research study incorporating photovoice (see Chapter 17 for more information on photovoice). Eight young people, formerly in care and from diverse backgrounds, were recruited to the study. The lead researcher highlighted their own lived experience of the child welfare system and a consciousness of the power dynamics at play. The lead researcher created processes within the project to ensure the youth co-researchers were empowered to share their experiences and that the research team members were working with the youth co-researchers and not for them. These processes included three months of weekly facilitated group discussions, shared meals before project commencement and group outings and community engagement during the project to encourage connection, bonding and trust. The youth co-researchers were provided with photography training and digital cameras. Data collection included the youth co-researchers submitting 6–7 photographs with responses to the following questions for photo contextualisation:

• What does this photograph mean to you? Why is this photo, in particular, most significant to you?
• How do you see this photo as a reflection of the issue of supportive long-term relationships – and one that is relevant to you as a former youth in care in your community?
• What is the relationship between the content of the photo and how you perceive the community or the world around you? What recommendation for change in your community is associated with this photo? 2(para22)

The photographs were showcased at an exhibition that was open to the community; those in attendance included policymakers, advocates and community representatives. The change documented through this project was one of social transformation for the community and self-transformation and healing for the individuals.

Action research as improvement

Action research can be practitioner-led, whereby the study investigates problems identified by the practitioner with the goal of understanding and improving practice over time. Improvement can be both social improvement and healthcare improvement. Healthcare improvement, in particular quality (of healthcare) improvement, has been the focus of clinical practice, research, education and advocacy for more than 30 years. The two main frameworks guiding healthcare and quality improvement efforts are the Plan, Do, Study, Act (PDSA) cycle and Learning Health Systems. 3 Both of these frameworks lend themselves to action research. For example, the PDSA cycle is guided by three overarching questions:

• What are we trying to accomplish?
• How will we know that a change is an improvement?
• What change can we make that will result in improvement? 4(Figure1)

Learning Health Systems is another approach to quality improvement that has gained popularity over the past decade. Data collected by health services (e.g. patient data, health records, laboratory results) are used for knowledge creation in continuous and rapid cycles of study, feedback and practice change. 5 A Learning Health Systems framework incorporates systems science, data science, research methods for real-world contexts, implementation science, participatory research and quality improvement approaches.

Van Heerden and colleagues adopted an action research study to transform the practice and environment of neonatal care in the maternity section of a district hospital in South Africa. The study Strategies to sustain a quality improvement initiative in neonatal resuscitation 6 was conducted in three cycles. Cycle 1 was a situation analysis that explored and described the existing practices and factors influencing neonatal resuscitation and mortality in the hospital through administering questionnaires with nurses (n=69); a focus group with nine doctors; and an analysis of hospital records. A nominal group discussion (structured group discussion including prioritisation) was conducted with 10 managers and staff, followed by a reflective meeting with the project’s steering committee. Cycle 2 developed and implemented strategies to sustain a quality improvement initiative. The strategies addressed training, equipment and stock, staff attitudes, staff shortages, transport transfer for critically ill neonates, and protocols. Cycle 3 was an evaluation of change and sustainability after the implementation of strategies (Cycle 2) and involved the analysis of hospital record data, repeat questionnaire with nurses (n=40), focus group discussion with 10 doctors, steering committee and management members, followed by reflective meetings with the steering committee. Qualitative data was analysed through open coding, and quantitative data was analysed descriptively. The neonatal mortality rate declined (yet still needed to improve) and the implementation strategies facilitated change that led to improvement and practice transformation.

Action research as a methodology or an approach

There is debate as to whether action research is a methodology or an approach, since several different research methods and methodologies can be used. For example, multiple forms of data collection can be utilized, including quantitative data from surveys or medical records, to inform the identification and understanding of the problem and evaluation of the solution. Action research can also draw on descriptive qualitative research, quantitative cross-sectional studies, case studies (see Chapter 8 ), ethnography ( Chapter 9 ) and grounded theory ( Chapter 10 ). Action research can therefore take a purely qualitative approach, or can take a mixed-methods approach. See Table 7.1. for examples of action research studies.

Advantages and disadvantages of action research

Action research addresses practical problems, drawing on principles of empowerment, capacity-building and participation. The research problem to be addressed is typically identified by the community, and the solutions are for the community. The research participants are collaborators in the research process. The examples presented in this chapter demonstrate how the research collaborators and co-researchers received training and support to lead elements of the project. Another advantage of action research is that it is a continuous cycle of development. Hence, the approach is iterative and the full solution can take multiple cycles and iterations to develop and sustain. 7,8

Since action research is fundamentally about relationships and integrating research into the real world, studies can take years to result in a solution. It is important to be able to adapt and be flexible in response to community and stakeholder needs and contexts. The research can therefore be constrained by what is practical and also ethical within the setting. This may limit the scope and scale of the research and compromise its rigour. Action research can also create unanticipated work for community members and participants because they are not usually involved in research in this way, and thus training may be required, as well as remuneration for time and experience. 7,8

Action research is a research design in which researchers and community members work together to identify problems, design and implement solutions and evaluate the impact of these solutions. Change or action is a core component of this research design.

• Baum F, MacDougall C, Smith D. Participatory action research. J Epidemiol Community Health .  2006;60(10):854-857. doi:10.1136/jech.2004.028662
• Doucet M, Pratt H, Dzhenganin M, Read J. Nothing About Us Without Us: Using Participatory Action Research (PAR) and arts-based methods as empowerment and social justice tools in doing research with youth ‘aging out’ of care. Child Abuse Negl . 2022;130:105358. doi: 10.1016/j.chiabu.2021.105358
• Taylor J, Coates E, Wessels B, Mountain G, Hawley MS. Implementing solutions to improve and expand telehealth adoption: participatory action research in four community healthcare settings. BMC Health Serv Res . 2015;15:529. doi:10.1186/s12913-015-1195-3
• Taylor MJ, McNicholas C, Nicolay C, Darzi A, Bell D, Reed JE. Systematic review of the application of the plan-do-study-act method to improve quality in healthcare. BMJ Qual Saf .  2014;23(4):290-298. doi:10.1136/bmjqs-2013-001862
• Menear M, Blanchette MA, Demers-Payette O, Roy D. A framework for value-creating learning health systems. Health Res Policy Syst . 2019;17(1):79. doi:10.1186/s12961-019-0477-3
• Van Heerden C, Maree C, Janse Van Rensburg ES. Strategies to sustain a quality improvement initiative in neonatal resuscitation. Afr J Prim Health Care Fam Med . 2016;8(2):a958. doi:10.4102/phcfm.v8i2.958
• Liamputtong P. Qualitative Research Methods . 5th ed. Oxford University Press; 2020.
• Liamputtong P, Ezzy D. Qualitative Research Methods: A Health Focus . Oxford University Press; 1999.
• Middleton TRF, Schinke RJ, Lefebvre D, Habra B, Coholic D, Giffin C. Critically examining a community-based participatory action research project with forced migrant youth. Sport Soc . 2021;25(2):418-433. doi:10.1080/17430437.2022.2017619

Qualitative Research – a practical guide for health and social care researchers and practitioners Copyright © 2023 by Darshini Ayton is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License , except where otherwise noted.

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Qualitative study design: Action research

• Qualitative study design
• Phenomenology
• Grounded theory
• Ethnography
• Narrative inquiry
• Action research
• Case Studies
• Field research
• Focus groups
• Observation
• Surveys & questionnaires
• Study Designs Home

Action research / Participatory Action Research

These methods focus on the emancipation, collaboration and empowerment of the participants. This methodology is appropriate for collaborative research with groups, especially marginalised groups, where there is more flexibility in how the research is conducted and considers feedback from the participants. 

Has three primary characteristics:  

Action oriented, participants are actively involved in the research.

involvement by participants in the research, collaborative process between participant and researcher - empowerment of participants. The participants have more of a say in what is being researched and how they want the research to be conducted.

cycle is iterative so that it is flexible and responsive to a changing situation.  

• Questionnaires
• Oral recordings
• Focus groups,
• Photovoice (use of images or video to capture the local environment / community and to share with others)
• Informal conversations 

Produces knowledge from marginalised people's point of view and can lead to more personalised interventions.  

Provides a voice for people to speak about their issues and the ability to improve their own lives. People take an active role in implementing any actions arising from the research. 

Transforms social reality by linking theory and practice.  

Limitations

Open ended questions are mainly used, and these can be misinterpreted by researcher – data needs to be cross-checked with other sources.

Data ownership between researcher and research participants needs to be negotiated and clearly stated from the beginning of the project.

Ethical considerations with privacy and confidentiality.

This method is not considered scientific as it is more fluid in its gathering of information and is considered an unconventional research method – thus it may not attract much funding.

Example questions

• What is the cultural significance of yarning amongst Aboriginal people? 

Macro Question:

• “What would it take to improve the stability of young people’s living situations?” 

Micro Questions: 

• “What can we do to better engage with accommodation service providers?” 
• “What can we do to improve the service knowledge of young people?” 
• “What can we do to measure stability outcomes for our clients?” 

(Department of Social Services) 

Example studies

• Miller, A., Massey, P. D., Judd, J., Kelly, J., Durrheim, D. N., Clough, A. R., . . . Saggers, S. (2015). Using a participatory action research framework to listen to Aboriginal and Torres Strait Islander people in Australia about pandemic influenza.  Rural and Remote Health , 15(3), 2923-2923.  
• Spinney, A. (2013). Safe from the Start? An Action Research Project on Early Intervention Materials for Children Affected by Domestic and Family Violence. Children & Society, 27(5), 397-405. doi:10.1111/j.1099-0860.2012.00454.x 
• Department of Social Services. (2019).  On PAR  - Using participatory action research to improve early intervention. 
• Liamputtong, P. (2013). Qualitative research methods (4th ed.). South Melbourne: Oxford  University Press. 
• Mills, J., & Birks, M. (2014). Qualitative Methodology: A Practical Guide. Retrieved from https://methods.sagepub.com/book/qualitative-methodology-a-practical-guide doi:10.4135/9781473920163   
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• Section 2: Home
• Developing the Quantitative Research Design
• Qualitative Descriptive Design
• Design and Development Research (DDR) For Instructional Design
• Qualitative Narrative Inquiry Research
• Action Research Resource

What is Action Research?

Considerations, creating a plan of action.

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Action research is a qualitative method that focuses on solving problems in social systems, such as schools and other organizations. The emphasis is on solving the presenting problem by generating knowledge and taking action within the social system in which the problem is located. The goal is to generate shared knowledge of how to address the problem by bridging the theory-practice gap (Bourner & Brook, 2019). A general definition of action research is the following: “Action research brings together action and reflection, as well as theory and practice, in participation with others, in the pursuit of practical solutions to issues of pressing concern” (Bradbury, 2015, p. 1). Johnson (2019) defines action research in the field of education as “the process of studying a school, classroom, or teacher-learning situation with the purpose of understanding and improving the quality of actions or instruction” (p.255).

Origins of Action Research

Kurt Lewin is typically credited with being the primary developer of Action Research in the 1940s. Lewin stated that action research can “transform…unrelated individuals, frequently opposed in their outlook and their interests, into cooperative teams, not on the basis of sweetness but on the basis of readiness to face difficulties realistically, to apply honest fact-finding, and to work together to overcome them” (1946, p.211).

Sample Action Research Topics

Some sample action research topics might be the following:

• Examining how classroom teachers perceive and implement new strategies in the classroom--How is the strategy being used? How do students respond to the strategy? How does the strategy inform and change classroom practices? Does the new skill improve test scores? Do classroom teachers perceive the strategy as effective for student learning?
• Examining how students are learning a particular content or objectives--What seems to be effective in enhancing student learning? What skills need to be reinforced? How do students respond to the new content? What is the ability of students to understand the new content?
• Examining how education stakeholders (administrator, parents, teachers, students, etc.) make decisions as members of the school’s improvement team--How are different stakeholders encouraged to participate? How is power distributed? How is equity demonstrated? How is each voice valued? How are priorities and initiatives determined? How does the team evaluate its processes to determine effectiveness?
• Examining the actions that school staff take to create an inclusive and welcoming school climate--Who makes and implements the actions taken to create the school climate? Do members of the school community (teachers, staff, students) view the school climate as inclusive? Do members of the school community feel welcome in the school? How are members of the school community encouraged to become involved in school activities? What actions can school staff take to help others feel a part of the school community?
• Examining the perceptions of teachers with regard to the learning strategies that are more effective with special populations, such as special education students, English Language Learners, etc.—What strategies are perceived to be more effective? How do teachers plan instructionally for unique learners such as special education students or English Language Learners? How do teachers deal with the challenges presented by unique learners such as special education students or English Language Learners? What supports do teachers need (e.g., professional development, training, coaching) to more effectively deliver instruction to unique learners such as special education students or English Language Learners?

Remember—The goal of action research is to find out how individuals perceive and act in a situation so the researcher can develop a plan of action to improve the educational organization. While these topics listed here can be explored using other research designs, action research is the design to use if the outcome is to develop a plan of action for addressing and improving upon a situation in the educational organization.

Considerations for Determining Whether to Use Action Research in an Applied Dissertation

• When considering action research, first determine the problem and the change that needs to occur as a result of addressing the problem (i.e., research problem and research purpose). Remember, the goal of action research is to change how individuals address a particular problem or situation in a way that results in improved practices.
• If the study will be conducted at a school site or educational organization, you may need site permission. Determine whether site permission will be given to conduct the study.
• Consider the individuals who will be part of the data collection (e.g., teachers, administrators, parents, other school staff, etc.). Will there be a representative sample willing to participate in the research?
• If students will be part of the study, does parent consent and student assent need to be obtained?
• As you develop your data collection plan, also consider the timeline for data collection. Is it feasible? For example, if you will be collecting data in a school, consider winter and summer breaks, school events, testing schedules, etc.
• As you develop your data collection plan, consult with your dissertation chair, Subject Matter Expert, NU Academic Success Center, and the NU IRB for resources and guidance.
• Action research is not an experimental design, so you are not trying to accept or reject a hypothesis. There are no independent or dependent variables. It is not generalizable to a larger setting. The goal is to understand what is occurring in the educational setting so that a plan of action can be developed for improved practices.

Considerations for Action Research

Below are some things to consider when developing your applied dissertation proposal using Action Research (adapted from Johnson, 2019):

• Research Topic and Research Problem -- Decide the topic to be studied and then identify the problem by defining the issue in the learning environment. Use references from current peer-reviewed literature for support.
• Purpose of the Study —What need to be different or improved as a result of the study?
• Research Questions —The questions developed should focus on “how” or “what” and explore individuals’ experiences, beliefs, and perceptions.
• Theoretical Framework -- What are the existing theories (theoretical framework) or concepts (conceptual framework) that can be used to support the research. How does existing theory link to what is happening in the educational environment with regard to the topic? What theories have been used to support similar topics in previous research?
• Literature Review -- Examine the literature, focusing on peer-reviewed studies published in journal within the last five years, with the exception of seminal works. What about the topic has already been explored and examined? What were the findings, implications, and limitations of previous research? What is missing from the literature on the topic?  How will your proposed research address the gap in the literature?
• Data Collection —Who will be part of the sample for data collection? What data will be collected from the individuals in the study (e.g., semi-structured interviews, surveys, etc.)? What are the educational artifacts and documents that need to be collected (e.g., teacher less plans, student portfolios, student grades, etc.)? How will they be collected and during what timeframe? (Note--A list of sample data collection methods appears under the heading of “Sample Instrumentation.”)
• Data Analysis —Determine how the data will be analyzed. Some types of analyses that are frequently used for action research include thematic analysis and content analysis.
• Implications —What conclusions can be drawn based upon the findings? How do the findings relate to the existing literature and inform theory in the field of education?
• Recommendations for Practice--Create a Plan of Action— This is a critical step in action research. A plan of action is created based upon the data analysis, findings, and implications. In the Applied Dissertation, this Plan of Action is included with the Recommendations for Practice. The includes specific steps that individuals should take to change practices; recommendations for how those changes will occur (e.g., professional development, training, school improvement planning, committees to develop guidelines and policies, curriculum review committee, etc.); and methods to evaluate the plan’s effectiveness.
• Recommendations for Research —What should future research focus on? What type of studies need to be conducted to build upon or further explore your findings.
• Professional Presentation or Defense —This is where the findings will be presented in a professional presentation or defense as the culmination of your research.

Adapted from Johnson (2019).

Considerations for Sampling and Data Collection

Below are some tips for sampling, sample size, data collection, and instrumentation for Action Research:

Sampling and Sample Size

Action research uses non-probability sampling. This is most commonly means a purposive sampling method that includes specific inclusion and exclusion criteria. However, convenience sampling can also be used (e.g., a teacher’s classroom).

Critical Concepts in Data Collection

Triangulation- - Dosemagen and Schwalbach (2019) discussed the importance of triangulation in Action Research which enhances the trustworthiness by providing multiple sources of data to analyze and confirm evidence for findings.

Trustworthiness —Trustworthiness assures that research findings are fulfill four critical elements—credibility, dependability, transferability, and confirmability. Reflect on the following: Are there multiple sources of data? How have you ensured credibility, dependability, transferability, and confirmability? Have the assumptions, limitations, and delimitations of the study been identified and explained? Was the sample a representative sample for the study? Did any individuals leave the study before it ended? How have you controlled researcher biases and beliefs? Are you drawing conclusions that are not supported by data? Have all possible themes been considered? Have you identified other studies with similar results?

Sample Instrumentation

Below are some of the possible methods for collecting action research data:

• Pre- and Post-Surveys for students and/or staff
• Staff Perception Surveys and Questionnaires
• Semi-Structured Interviews
• Focus Groups
• Observations
• Document analysis
• Student work samples
• Classroom artifacts, such as teacher lesson plans, rubrics, checklists, etc.
• Attendance records
• Discipline data
• Journals from students and/or staff
• Portfolios from students and/or staff

A benefit of Action Research is its potential to influence educational practice. Many educators are, by nature of the profession, reflective, inquisitive, and action-oriented. The ultimate outcome of Action Research is to create a plan of action using the research findings to inform future educational practice. A Plan of Action is not meant to be a one-size fits all plan. Instead, it is mean to include specific data-driven and research-based recommendations that result from a detailed analysis of the data, the study findings, and implications of the Action Research study. An effective Plan of Action includes an evaluation component and opportunities for professional educator reflection that allows for authentic discussion aimed at continuous improvement.

When developing a Plan of Action, the following should be considered:

• How can this situation be approached differently in the future?
• What should change in terms of practice?
• What are the specific steps that individuals should take to change practices?
• What is needed to implement the changes being recommended (professional development, training, materials, resources, planning committees, school improvement planning, etc.)?
• How will the effectiveness of the implemented changes be evaluated?
• How will opportunities for professional educator reflection be built into the Action Plan?

Sample Action Research Studies

Anderson, A. J. (2020). A qualitative systematic review of youth participatory action research implementation in U.S. high schools. A merican Journal of Community Psychology, 65 (1/2), 242–257. https://onlinelibrary-wiley-com.proxy1.ncu.edu/doi/epdf/10.1002/ajcp.12389

Ayvaz, Ü., & Durmuş, S.(2021). Fostering mathematical creativity with problem posing activities: An action research with gifted students. Thinking Skills and Creativity, 40. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edselp&AN=S1871187121000614&site=eds-live

Bellino, M. J. (2018). Closing information gaps in Kakuma Refugee Camp: A youth participatory action research study. American Journal of Community Psychology, 62 (3/4), 492–507. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ofs&AN=133626988&site=eds-live

Beneyto, M., Castillo, J., Collet-Sabé, J., & Tort, A. (2019). Can schools become an inclusive space shared by all families? Learnings and debates from an action research project in Catalonia. Educational Action Research, 27 (2), 210–226. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=135671904&site=eds-live

Bilican, K., Senler, B., & Karısan, D. (2021). Fostering teacher educators’ professional development through collaborative action research. International Journal of Progressive Education, 17 (2), 459–472. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=149828364&site=eds-live

Black, G. L. (2021). Implementing action research in a teacher preparation program: Opportunities and limitations. Canadian Journal of Action Research, 21 (2), 47–71. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=149682611&site=eds-live

Bozkuş, K., & Bayrak, C. (2019). The Application of the dynamic teacher professional development through experimental action research. International Electronic Journal of Elementary Education, 11 (4), 335–352. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=135580911&site=eds-live

Christ, T. W. (2018). Mixed methods action research in special education: An overview of a grant-funded model demonstration project. Research in the Schools, 25( 2), 77–88. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=135047248&site=eds-live

Jakhelln, R., & Pörn, M. (2019). Challenges in supporting and assessing bachelor’s theses based on action research in initial teacher education. Educational Action Research, 27 (5), 726–741. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=140234116&site=eds-live

Klima Ronen, I. (2020). Action research as a methodology for professional development in leading an educational process. Studies in Educational Evaluation, 64 . https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edselp&AN=S0191491X19302159&site=eds-live

Messiou, K. (2019). Collaborative action research: facilitating inclusion in schools. Educational Action Research, 27 (2), 197–209. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=135671898&site=eds-live

Mitchell, D. E. (2018). Say it loud: An action research project examining the afrivisual and africology, Looking for alternative African American community college teaching strategies. Journal of Pan African Studies, 12 (4), 364–487. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ofs&AN=133155045&site=eds-live

Pentón Herrera, L. J. (2018). Action research as a tool for professional development in the K-12 ELT classroom. TESL Canada Journal, 35 (2), 128–139. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ofs&AN=135033158&site=eds-live

Rodriguez, R., Macias, R. L., Perez-Garcia, R., Landeros, G., & Martinez, A. (2018). Action research at the intersection of structural and family violence in an immigrant Latino community: a youth-led study. Journal of Family Violence, 33 (8), 587–596. https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=132323375&site=eds-live

Vaughan, M., Boerum, C., & Whitehead, L. (2019). Action research in doctoral coursework: Perceptions of independent research experiences. International Journal for the Scholarship of Teaching and Learning, 13 . https://proxy1.ncu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=edsdoj&AN=edsdoj.17aa0c2976c44a0991e69b2a7b4f321&site=eds-live

Sample Journals for Action Research

Educational Action Research

Canadian Journal of Action Research

Sample Resource Videos

Call-Cummings, M. (2017). Researching racism in schools using participatory action research [Video]. Sage Research Methods  http://proxy1.ncu.edu/login?URL=https://methods.sagepub.com/video/researching-racism-in-schools-using-participatory-action-research

Fine, M. (2016). Michelle Fine discusses community based participatory action research [Video]. Sage Knowledge. http://proxy1.ncu.edu/login?URL=https://sk-sagepub-com.proxy1.ncu.edu/video/michelle-fine-discusses-community-based-participatory-action-research

Getz, C., Yamamura, E., & Tillapaugh. (2017). Action Research in Education. [Video]. You Tube. https://www.youtube.com/watch?v=X2tso4klYu8

Bradbury, H. (Ed.). (2015). The handbook of action research (3rd edition). Sage.

Bradbury, H., Lewis, R. & Embury, D.C. (2019). Education action research: With and for the next generation. In C.A. Mertler (Ed.), The Wiley handbook of action research in education (1st edition). John Wiley and Sons. https://ebookcentral.proquest.com/lib/nu/reader.action?docID=5683581&ppg=205

Bourner, T., & Brook, C. (2019). Comparing and contrasting action research and action learning. In C.A. Mertler (Ed.), The Wiley handbook of action research in education (1st edition). John Wiley and Sons. https://ebookcentral.proquest.com/lib/nu/reader.action?docID=5683581&ppg=205

Bradbury, H. (2015). The Sage handbook of action research . Sage. https://www-doi-org.proxy1.ncu.edu/10.4135/9781473921290

Dosemagen, D.M. & Schwalback, E.M. (2019). Legitimacy of and value in action research. In C.A. Mertler (Ed.), The Wiley handbook of action research in education (1st edition). John Wiley and Sons. https://ebookcentral.proquest.com/lib/nu/reader.action?docID=5683581&ppg=205

Johnson, A. (2019). Action research for teacher professional development. In C.A. Mertler (Ed.), The Wiley handbook of action research in education (1st edition). John Wiley and Sons. https://ebookcentral.proquest.com/lib/nu/reader.action?docID=5683581&ppg=205

Lewin, K. (1946). Action research and minority problems. In G.W. Lewin (Ed.), Resolving social conflicts: Selected papers on group dynamics (compiled in 1948). Harper and Row.

Mertler, C. A. (Ed.). (2019). The Wiley handbook of action research in education. John Wiley and Sons. https://ebookcentral.proquest.com/lib/nu/detail.action?docID=5683581

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• What Is Action Research? | Definition & Examples

What Is Action Research? | Definition & Examples

Published on 27 January 2023 by Tegan George . Revised on 21 April 2023.

Table of contents

Types of action research, action research models, examples of action research, action research vs. traditional research, advantages and disadvantages of action research, frequently asked questions about action research.

There are 2 common types of action research: participatory action research and practical action research.

• Participatory action research emphasises that participants should be members of the community being studied, empowering those directly affected by outcomes of said research. In this method, participants are effectively co-researchers, with their lived experiences considered formative to the research process.
• Practical action research focuses more on how research is conducted and is designed to address and solve specific issues.

Both types of action research are more focused on increasing the capacity and ability of future practitioners than contributing to a theoretical body of knowledge.

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Action research is often reflected in 3 action research models: operational (sometimes called technical), collaboration, and critical reflection.

• Operational (or technical) action research is usually visualised like a spiral following a series of steps, such as “planning → acting → observing → reflecting.”
• Collaboration action research is more community-based, focused on building a network of similar individuals (e.g., college professors in a given geographic area) and compiling learnings from iterated feedback cycles.
• Critical reflection action research serves to contextualise systemic processes that are already ongoing (e.g., working retroactively to analyse existing school systems by questioning why certain practices were put into place and developed the way they did).

Action research is often used in fields like education because of its iterative and flexible style.

After the information was collected, the students were asked where they thought ramps or other accessibility measures would be best utilised, and the suggestions were sent to school administrators. Example: Practical action research Science teachers at your city’s high school have been witnessing a year-over-year decline in standardised test scores in chemistry. In seeking the source of this issue, they studied how concepts are taught in depth, focusing on the methods, tools, and approaches used by each teacher.

Action research differs sharply from other types of research in that it seeks to produce actionable processes over the course of the research rather than contributing to existing knowledge or drawing conclusions from datasets. In this way, action research is formative , not summative , and is conducted in an ongoing, iterative way.

As such, action research is different in purpose, context, and significance and is a good fit for those seeking to implement systemic change.

Action research comes with advantages and disadvantages.

• Action research is highly adaptable , allowing researchers to mould their analysis to their individual needs and implement practical individual-level changes.
• Action research provides an immediate and actionable path forward for solving entrenched issues, rather than suggesting complicated, longer-term solutions rooted in complex data.
• Done correctly, action research can be very empowering , informing social change and allowing participants to effect that change in ways meaningful to their communities.

Disadvantages

• Due to their flexibility, action research studies are plagued by very limited generalisability  and are very difficult to replicate . They are often not considered theoretically rigorous due to the power the researcher holds in drawing conclusions.
• Action research can be complicated to structure in an ethical manner . Participants may feel pressured to participate or to participate in a certain way.
• Action research is at high risk for research biases such as selection bias , social desirability bias , or other types of cognitive biases .

Action research is conducted in order to solve a particular issue immediately, while case studies are often conducted over a longer period of time and focus more on observing and analyzing a particular ongoing phenomenon.

Action research is focused on solving a problem or informing individual and community-based knowledge in a way that impacts teaching, learning, and other related processes. It is less focused on contributing theoretical input, instead producing actionable input.

Action research is particularly popular with educators as a form of systematic inquiry because it prioritizes reflection and bridges the gap between theory and practice. Educators are able to simultaneously investigate an issue as they solve it, and the method is very iterative and flexible.

A cycle of inquiry is another name for action research . It is usually visualized in a spiral shape following a series of steps, such as “planning → acting → observing → reflecting.”

Sources for this article

We strongly encourage students to use sources in their work. You can cite our article (APA Style) or take a deep dive into the articles below.

George, T. (2023, April 21). What Is Action Research? | Definition & Examples. Scribbr. Retrieved 3 September 2024, from https://www.scribbr.co.uk/research-methods/action-research-cycle/

Cohen, L., Manion, L., & Morrison, K. (2017). Research methods in education (8th edition). Routledge.

Naughton, G. M. (2001).  Action research (1st edition). Routledge.

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Action research

A type of applied research designed to find the most effective way to bring about a desired social change or to solve a practical problem, usually in collaboration with those being researched.

SAGE Research Methods Videos

How do you define action research.

Professor David Coghlan explains action research as an approach that crosses many academic disciplines yet has a shared focus on taking action to address a problem. He describes the difference between this approach and empirical scientific approaches, particularly highlighting the challenge of getting action research to be taken seriously by academic journals

Dr. Nataliya Ivankova defines action research as using systematic research principles to address an issue in everyday life. She delineates the six steps of action research, and illustrates the concept using an anti-diabetes project in an urban area.

This is just one segment in a whole series about action research. You can find the rest of the series in our SAGE database, Research Methods:

Videos covering research methods and statistics

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Action Re search

Acti on research is defined by O'Leary (2007) as

"Research strategies that tackle real-world problems in participatory, collaborative, and cyclical ways in order to produce both knowledge  and action."

It refers to a type of research methodology which works toward a kind of change (whether social or professional). Because its goals are oriented toward change rather than knowledge-gathering alone, active research studies are often based in everyday issues, and concern themselves with the creation of practical solutions to these problems.

Elements of action research studies include:

• Identify a problem
• Research the problem and its probable causes
• Develop a response to the problem
• Implement the proposed solution
• Observe the implementation of the solution
• Reflect on the results (and start over, if necessary)

For more in-depth information, browse the resources below:

Where to Start

Below, a few tools and online guides that can help you start your action research project are listed. These include free online resources and resources available only through ISU Library.

• Action Research Handout [pdf] From the University of Pittsburgh, this handout defines action research, how it can be carried out, and common features of this type of research.

Online Resources

• YouTube - What is Action Research? This video reviews action research as it is used in education.
• Action Research - Informal Education From the encyclopedia of information education, this is another helpful article on action research, featuring different ways of describing it.
• Action research - Wikipedia, the free encyclopedia Wikipedia can be a useful place to start your research- check the citations at the bottom of the article for more information.
• Center for Collaborative Action Research A website for collaboration in action research.
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• What Is Qualitative Research? | Methods & Examples

What Is Qualitative Research? | Methods & Examples

Published on June 19, 2020 by Pritha Bhandari . Revised on June 22, 2023.

Qualitative research involves collecting and analyzing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research.

Qualitative research is the opposite of quantitative research , which involves collecting and analyzing numerical data for statistical analysis.

Qualitative research is commonly used in the humanities and social sciences, in subjects such as anthropology, sociology, education, health sciences, history, etc.

• How does social media shape body image in teenagers?
• How do children and adults interpret healthy eating in the UK?
• What factors influence employee retention in a large organization?
• How is anxiety experienced around the world?
• How can teachers integrate social issues into science curriculums?

Table of contents

Approaches to qualitative research, qualitative research methods, qualitative data analysis, advantages of qualitative research, disadvantages of qualitative research, other interesting articles, frequently asked questions about qualitative research.

Qualitative research is used to understand how people experience the world. While there are many approaches to qualitative research, they tend to be flexible and focus on retaining rich meaning when interpreting data.

Common approaches include grounded theory, ethnography , action research , phenomenological research, and narrative research. They share some similarities, but emphasize different aims and perspectives.

Note that qualitative research is at risk for certain research biases including the Hawthorne effect , observer bias , recall bias , and social desirability bias . While not always totally avoidable, awareness of potential biases as you collect and analyze your data can prevent them from impacting your work too much.

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Each of the research approaches involve using one or more data collection methods . These are some of the most common qualitative methods:

• Observations: recording what you have seen, heard, or encountered in detailed field notes.
• Interviews:  personally asking people questions in one-on-one conversations.
• Focus groups: asking questions and generating discussion among a group of people.
• Surveys : distributing questionnaires with open-ended questions.
• Secondary research: collecting existing data in the form of texts, images, audio or video recordings, etc.
• You take field notes with observations and reflect on your own experiences of the company culture.
• You distribute open-ended surveys to employees across all the company’s offices by email to find out if the culture varies across locations.
• You conduct in-depth interviews with employees in your office to learn about their experiences and perspectives in greater detail.

Qualitative researchers often consider themselves “instruments” in research because all observations, interpretations and analyses are filtered through their own personal lens.

For this reason, when writing up your methodology for qualitative research, it’s important to reflect on your approach and to thoroughly explain the choices you made in collecting and analyzing the data.

Qualitative data can take the form of texts, photos, videos and audio. For example, you might be working with interview transcripts, survey responses, fieldnotes, or recordings from natural settings.

Most types of qualitative data analysis share the same five steps:

• Prepare and organize your data. This may mean transcribing interviews or typing up fieldnotes.
• Review and explore your data. Examine the data for patterns or repeated ideas that emerge.
• Develop a data coding system. Based on your initial ideas, establish a set of codes that you can apply to categorize your data.
• Assign codes to the data. For example, in qualitative survey analysis, this may mean going through each participant’s responses and tagging them with codes in a spreadsheet. As you go through your data, you can create new codes to add to your system if necessary.
• Identify recurring themes. Link codes together into cohesive, overarching themes.

There are several specific approaches to analyzing qualitative data. Although these methods share similar processes, they emphasize different concepts.

Qualitative research often tries to preserve the voice and perspective of participants and can be adjusted as new research questions arise. Qualitative research is good for:

• Flexibility

The data collection and analysis process can be adapted as new ideas or patterns emerge. They are not rigidly decided beforehand.

• Natural settings

Data collection occurs in real-world contexts or in naturalistic ways.

• Meaningful insights

Detailed descriptions of people’s experiences, feelings and perceptions can be used in designing, testing or improving systems or products.

• Generation of new ideas

Open-ended responses mean that researchers can uncover novel problems or opportunities that they wouldn’t have thought of otherwise.

Researchers must consider practical and theoretical limitations in analyzing and interpreting their data. Qualitative research suffers from:

• Unreliability

The real-world setting often makes qualitative research unreliable because of uncontrolled factors that affect the data.

• Subjectivity

Due to the researcher’s primary role in analyzing and interpreting data, qualitative research cannot be replicated . The researcher decides what is important and what is irrelevant in data analysis, so interpretations of the same data can vary greatly.

• Limited generalizability

Small samples are often used to gather detailed data about specific contexts. Despite rigorous analysis procedures, it is difficult to draw generalizable conclusions because the data may be biased and unrepresentative of the wider population .

• Labor-intensive

Although software can be used to manage and record large amounts of text, data analysis often has to be checked or performed manually.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

• Chi square goodness of fit test
• Degrees of freedom
• Null hypothesis
• Discourse analysis
• Control groups
• Mixed methods research
• Non-probability sampling
• Quantitative research
• Inclusion and exclusion criteria

Research bias

• Rosenthal effect
• Implicit bias
• Cognitive bias
• Selection bias
• Negativity bias
• Status quo bias

Quantitative research deals with numbers and statistics, while qualitative research deals with words and meanings.

Quantitative methods allow you to systematically measure variables and test hypotheses . Qualitative methods allow you to explore concepts and experiences in more detail.

There are five common approaches to qualitative research :

• Grounded theory involves collecting data in order to develop new theories.
• Ethnography involves immersing yourself in a group or organization to understand its culture.
• Narrative research involves interpreting stories to understand how people make sense of their experiences and perceptions.
• Phenomenological research involves investigating phenomena through people’s lived experiences.
• Action research links theory and practice in several cycles to drive innovative changes.

Data collection is the systematic process by which observations or measurements are gathered in research. It is used in many different contexts by academics, governments, businesses, and other organizations.

There are various approaches to qualitative data analysis , but they all share five steps in common:

• Prepare and organize your data.
• Review and explore your data.
• Develop a data coding system.
• Assign codes to the data.
• Identify recurring themes.

The specifics of each step depend on the focus of the analysis. Some common approaches include textual analysis , thematic analysis , and discourse analysis .

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Action Research: What it is, Stages & Examples

The best way to get things accomplished is to do it yourself. This statement is utilized in corporations, community projects, and national governments. These organizations are relying on action research to cope with their continuously changing and unstable environments as they function in a more interdependent world.

In practical educational contexts, this involves using systematic inquiry and reflective practice to address real-world challenges, improve teaching and learning, enhance student engagement, and drive positive changes within the educational system.

This post outlines the definition of action research, its stages, and some examples.

Content Index

What is action research?

Stages of action research, the steps to conducting action research, examples of action research, advantages and disadvantages of action research.

Action research is a strategy that tries to find realistic solutions to organizations’ difficulties and issues. It is similar to applied research.

Action research refers basically learning by doing. First, a problem is identified, then some actions are taken to address it, then how well the efforts worked are measured, and if the results are not satisfactory, the steps are applied again.

It can be put into three different groups:

• Positivist: This type of research is also called “classical action research.” It considers research a social experiment. This research is used to test theories in the actual world.
• Interpretive: This kind of research is called “contemporary action research.” It thinks that business reality is socially made, and when doing this research, it focuses on the details of local and organizational factors.
• Critical: This action research cycle takes a critical reflection approach to corporate systems and tries to enhance them.

All research is about learning new things. Collaborative action research contributes knowledge based on investigations in particular and frequently useful circumstances. It starts with identifying a problem. After that, the research process is followed by the below stages:

Stage 1: Plan

For an action research project to go well, the researcher needs to plan it well. After coming up with an educational research topic or question after a research study, the first step is to develop an action plan to guide the research process. The research design aims to address the study’s question. The research strategy outlines what to undertake, when, and how.

Stage 2: Act

The next step is implementing the plan and gathering data. At this point, the researcher must select how to collect and organize research data . The researcher also needs to examine all tools and equipment before collecting data to ensure they are relevant, valid, and comprehensive.

Stage 3: Observe

Data observation is vital to any investigation. The action researcher needs to review the project’s goals and expectations before data observation. This is the final step before drawing conclusions and taking action.

Different kinds of graphs, charts, and networks can be used to represent the data. It assists in making judgments or progressing to the next stage of observing.

Stage 4: Reflect

This step involves applying a prospective solution and observing the results. It’s essential to see if the possible solution found through research can really solve the problem being studied.

The researcher must explore alternative ideas when the action research project’s solutions fail to solve the problem.

Action research is a systematic approach researchers, educators, and practitioners use to identify and address problems or challenges within a specific context. It involves a cyclical process of planning, implementing, reflecting, and adjusting actions based on the data collected. Here are the general steps involved in conducting an action research process:

Identify the action research question or problem

Clearly define the issue or problem you want to address through your research. It should be specific, actionable, and relevant to your working context.

Review existing knowledge

Conduct a literature review to understand what research has already been done on the topic. This will help you gain insights, identify gaps, and inform your research design.

Plan the research

Develop a research plan outlining your study’s objectives, methods, data collection tools, and timeline. Determine the scope of your research and the participants or stakeholders involved.

Collect data

Implement your research plan by collecting relevant data. This can involve various methods such as surveys, interviews, observations, document analysis, or focus groups. Ensure that your data collection methods align with your research objectives and allow you to gather the necessary information.

Analyze the data

Once you have collected the data, analyze it using appropriate qualitative or quantitative techniques. Look for patterns, themes, or trends in the data that can help you understand the problem better.

Reflect on the findings

Reflect on the analyzed data and interpret the results in the context of your research question. Consider the implications and possible solutions that emerge from the data analysis. This reflection phase is crucial for generating insights and understanding the underlying factors contributing to the problem.

Develop an action plan

Based on your analysis and reflection, develop an action plan that outlines the steps you will take to address the identified problem. The plan should be specific, measurable, achievable, relevant, and time-bound (SMART goals). Consider involving relevant stakeholders in planning to ensure their buy-in and support.

Implement the action plan

Put your action plan into practice by implementing the identified strategies or interventions. This may involve making changes to existing practices, introducing new approaches, or testing alternative solutions. Document the implementation process and any modifications made along the way.

Evaluate and monitor progress

Continuously monitor and evaluate the impact of your actions. Collect additional data, assess the effectiveness of the interventions, and measure progress towards your goals. This evaluation will help you determine if your actions have the desired effects and inform any necessary adjustments.

Reflect and iterate

Reflect on the outcomes of your actions and the evaluation results. Consider what worked well, what did not, and why. Use this information to refine your approach, make necessary adjustments, and plan for the next cycle of action research if needed.

Remember that participatory action research is an iterative process, and multiple cycles may be required to achieve significant improvements or solutions to the identified problem. Each cycle builds on the insights gained from the previous one, fostering continuous learning and improvement.

Explore Insightfully Contextual Inquiry in Qualitative Research

Here are two real-life examples of action research.

Action research initiatives are frequently situation-specific. Still, other researchers can adapt the techniques. The example is from a researcher’s (Franklin, 1994) report about a project encouraging nature tourism in the Caribbean.

In 1991, this was launched to study how nature tourism may be implemented on the four Windward Islands in the Caribbean: St. Lucia, Grenada, Dominica, and St. Vincent.

For environmental protection, a government-led action study determined that the consultation process needs to involve numerous stakeholders, including commercial enterprises.

First, two researchers undertook the study and held search conferences on each island. The search conferences resulted in suggestions and action plans for local community nature tourism sub-projects.

Several islands formed advisory groups and launched national awareness and community projects. Regional project meetings were held to discuss experiences, self-evaluations, and strategies. Creating a documentary about a local initiative helped build community. And the study was a success, leading to a number of changes in the area.

Lau and Hayward (1997) employed action research to analyze Internet-based collaborative work groups.

Over two years, the researchers facilitated three action research problem -solving cycles with 15 teachers, project personnel, and 25 health practitioners from diverse areas. The goal was to see how Internet-based communications might affect their virtual workgroup.

First, expectations were defined, technology was provided, and a bespoke workgroup system was developed. Participants suggested shorter, more dispersed training sessions with project-specific instructions.

The second phase saw the system’s complete deployment. The final cycle witnessed system stability and virtual group formation. The key lesson was that the learning curve was poorly misjudged, with frustrations only marginally met by phone-based technical help. According to the researchers, the absence of high-quality online material about community healthcare was harmful.

Role clarity, connection building, knowledge sharing, resource assistance, and experiential learning are vital for virtual group growth. More study is required on how group support systems might assist groups in engaging with their external environment and boost group members’ learning. 

Action research has both good and bad points.

• It is very flexible, so researchers can change their analyses to fit their needs and make individual changes.
• It offers a quick and easy way to solve problems that have been going on for a long time instead of complicated, long-term solutions based on complex facts.
• If It is done right, it can be very powerful because it can lead to social change and give people the tools to make that change in ways that are important to their communities.

Disadvantages

• These studies have a hard time being generalized and are hard to repeat because they are so flexible. Because the researcher has the power to draw conclusions, they are often not thought to be theoretically sound.
• Setting up an action study in an ethical way can be hard. People may feel like they have to take part or take part in a certain way.
• It is prone to research errors like selection bias , social desirability bias, and other cognitive biases.

LEARN ABOUT: Self-Selection Bias

This post discusses how action research generates knowledge, its steps, and real-life examples. It is very applicable to the field of research and has a high level of relevance. We can only state that the purpose of this research is to comprehend an issue and find a solution to it.

At QuestionPro, we give researchers tools for collecting data, like our survey software, and a library of insights for any long-term study. Go to the Insight Hub if you want to see a demo or learn more about it.

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Frequently Asked Questions(FAQ’s)

Action research is a systematic approach to inquiry that involves identifying a problem or challenge in a practical context, implementing interventions or changes, collecting and analyzing data, and using the findings to inform decision-making and drive positive change.

Action research can be conducted by various individuals or groups, including teachers, administrators, researchers, and educational practitioners. It is often carried out by those directly involved in the educational setting where the research takes place.

The steps of action research typically include identifying a problem, reviewing relevant literature, designing interventions or changes, collecting and analyzing data, reflecting on findings, and implementing improvements based on the results.

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• Introduction

Qualitative research is a type of research that explores and provides deeper insights into real-world problems. [1] Instead of collecting numerical data points or intervening or introducing treatments just like in quantitative research, qualitative research helps generate hypothenar to further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much. It could be structured as a standalone study, purely relying on qualitative data, or part of mixed-methods research that combines qualitative and quantitative data. This review introduces the readers to some basic concepts, definitions, terminology, and applications of qualitative research.

Qualitative research, at its core, asks open-ended questions whose answers are not easily put into numbers, such as "how" and "why." [2] Due to the open-ended nature of the research questions, qualitative research design is often not linear like quantitative design. [2] One of the strengths of qualitative research is its ability to explain processes and patterns of human behavior that can be difficult to quantify. [3] Phenomena such as experiences, attitudes, and behaviors can be complex to capture accurately and quantitatively. In contrast, a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a particular time or during an event of interest. Quantifying qualitative data certainly is possible, but at its core, qualitative data is looking for themes and patterns that can be difficult to quantify, and it is essential to ensure that the context and narrative of qualitative work are not lost by trying to quantify something that is not meant to be quantified.

However, while qualitative research is sometimes placed in opposition to quantitative research, where they are necessarily opposites and therefore "compete" against each other and the philosophical paradigms associated with each other, qualitative and quantitative work are neither necessarily opposites, nor are they incompatible. [4] While qualitative and quantitative approaches are different, they are not necessarily opposites and certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated.

Qualitative Research Approaches

Ethnography

Ethnography as a research design originates in social and cultural anthropology and involves the researcher being directly immersed in the participant’s environment. [2] Through this immersion, the ethnographer can use a variety of data collection techniques to produce a comprehensive account of the social phenomena that occurred during the research period. [2] That is to say, the researcher’s aim with ethnography is to immerse themselves into the research population and come out of it with accounts of actions, behaviors, events, etc, through the eyes of someone involved in the population. Direct involvement of the researcher with the target population is one benefit of ethnographic research because it can then be possible to find data that is otherwise very difficult to extract and record.

Grounded theory

Grounded Theory is the "generation of a theoretical model through the experience of observing a study population and developing a comparative analysis of their speech and behavior." [5] Unlike quantitative research, which is deductive and tests or verifies an existing theory, grounded theory research is inductive and, therefore, lends itself to research aimed at social interactions or experiences. [3] [2] In essence, Grounded Theory’s goal is to explain how and why an event occurs or how and why people might behave a certain way. Through observing the population, a researcher using the Grounded Theory approach can then develop a theory to explain the phenomena of interest.

Phenomenology

Phenomenology is the "study of the meaning of phenomena or the study of the particular.” [5] At first glance, it might seem that Grounded Theory and Phenomenology are pretty similar, but the differences can be seen upon careful examination. At its core, phenomenology looks to investigate experiences from the individual's perspective. [2] Phenomenology is essentially looking into the "lived experiences" of the participants and aims to examine how and why participants behaved a certain way from their perspective. Herein lies one of the main differences between Grounded Theory and Phenomenology. Grounded Theory aims to develop a theory for social phenomena through an examination of various data sources. In contrast, Phenomenology focuses on describing and explaining an event or phenomenon from the perspective of those who have experienced it.

Narrative research

One of qualitative research’s strengths lies in its ability to tell a story, often from the perspective of those directly involved in it. Reporting on qualitative research involves including details and descriptions of the setting involved and quotes from participants. This detail is called a "thick" or "rich" description and is a strength of qualitative research. Narrative research is rife with the possibilities of "thick" description as this approach weaves together a sequence of events, usually from just one or two individuals, hoping to create a cohesive story or narrative. [2] While it might seem like a waste of time to focus on such a specific, individual level, understanding one or two people’s narratives for an event or phenomenon can help to inform researchers about the influences that helped shape that narrative. The tension or conflict of differing narratives can be "opportunities for innovation." [2]

Research Paradigm

Research paradigms are the assumptions, norms, and standards underpinning different research approaches. Essentially, research paradigms are the "worldviews" that inform research. [4] It is valuable for qualitative and quantitative researchers to understand what paradigm they are working within because understanding the theoretical basis of research paradigms allows researchers to understand the strengths and weaknesses of the approach being used and adjust accordingly. Different paradigms have different ontologies and epistemologies. Ontology is defined as the "assumptions about the nature of reality,” whereas epistemology is defined as the "assumptions about the nature of knowledge" that inform researchers' work. [2] It is essential to understand the ontological and epistemological foundations of the research paradigm researchers are working within to allow for a complete understanding of the approach being used and the assumptions that underpin the approach as a whole. Further, researchers must understand their own ontological and epistemological assumptions about the world in general because their assumptions about the world will necessarily impact how they interact with research. A discussion of the research paradigm is not complete without describing positivist, postpositivist, and constructivist philosophies.

Positivist versus postpositivist

To further understand qualitative research, we must discuss positivist and postpositivist frameworks. Positivism is a philosophy that the scientific method can and should be applied to social and natural sciences. [4] Essentially, positivist thinking insists that the social sciences should use natural science methods in their research. It stems from positivist ontology, that there is an objective reality that exists that is wholly independent of our perception of the world as individuals. Quantitative research is rooted in positivist philosophy, which can be seen in the value it places on concepts such as causality, generalizability, and replicability.

Conversely, postpositivists argue that social reality can never be one hundred percent explained, but could be approximated. [4] Indeed, qualitative researchers have been insisting that there are “fundamental limits to the extent to which the methods and procedures of the natural sciences could be applied to the social world,” and therefore, postpositivist philosophy is often associated with qualitative research. [4] An example of positivist versus postpositivist values in research might be that positivist philosophies value hypothesis-testing, whereas postpositivist philosophies value the ability to formulate a substantive theory.

Constructivist

Constructivism is a subcategory of postpositivism. Most researchers invested in postpositivist research are also constructivist, meaning they think there is no objective external reality that exists but instead that reality is constructed. Constructivism is a theoretical lens that emphasizes the dynamic nature of our world. "Constructivism contends that individuals' views are directly influenced by their experiences, and it is these individual experiences and views that shape their perspective of reality.” [6]  constructivist thought focuses on how "reality" is not a fixed certainty and how experiences, interactions, and backgrounds give people a unique view of the world. Constructivism contends, unlike positivist views, that there is not necessarily an "objective"reality we all experience. This is the ‘relativist’ ontological view that reality and our world are dynamic and socially constructed. Therefore, qualitative scientific knowledge can be inductive as well as deductive.” [4]

So why is it important to understand the differences in assumptions that different philosophies and approaches to research have? Fundamentally, the assumptions underpinning the research tools a researcher selects provide an overall base for the assumptions the rest of the research will have. It can even change the role of the researchers. [2] For example, is the researcher an "objective" observer, such as in positivist quantitative work? Or is the researcher an active participant in the research, as in postpositivist qualitative work? Understanding the philosophical base of the study undertaken allows researchers to fully understand the implications of their work and their role within the research and reflect on their positionality and bias as it pertains to the research they are conducting.

Data Sampling 

The better the sample represents the intended study population, the more likely the researcher is to encompass the varying factors. The following are examples of participant sampling and selection: [7]

• Purposive sampling- selection based on the researcher’s rationale for being the most informative.
• Criterion sampling selection based on pre-identified factors.
• Convenience sampling- selection based on availability.
• Snowball sampling- the selection is by referral from other participants or people who know potential participants.
• Extreme case sampling- targeted selection of rare cases.
• Typical case sampling selection based on regular or average participants. 

Data Collection and Analysis

Qualitative research uses several techniques, including interviews, focus groups, and observation. [1] [2] [3] Interviews may be unstructured, with open-ended questions on a topic, and the interviewer adapts to the responses. Structured interviews have a predetermined number of questions that every participant is asked. It is usually one-on-one and appropriate for sensitive topics or topics needing an in-depth exploration. Focus groups are often held with 8-12 target participants and are used when group dynamics and collective views on a topic are desired. Researchers can be participant-observers to share the experiences of the subject or non-participants or detached observers.

While quantitative research design prescribes a controlled environment for data collection, qualitative data collection may be in a central location or the participants' environment, depending on the study goals and design. Qualitative research could amount to a large amount of data. Data is transcribed, which may then be coded manually or using computer-assisted qualitative data analysis software or CAQDAS such as ATLAS.ti or NVivo. [8] [9] [10]

After the coding process, qualitative research results could be in various formats. It could be a synthesis and interpretation presented with excerpts from the data. [11] Results could also be in the form of themes and theory or model development.

Dissemination

The healthcare team can use two reporting standards to standardize and facilitate the dissemination of qualitative research outcomes. The Consolidated Criteria for Reporting Qualitative Research or COREQ is a 32-item checklist for interviews and focus groups. [12] The Standards for Reporting Qualitative Research (SRQR) is a checklist covering a more comprehensive range of qualitative research. [13]

Applications

Many times, a research question will start with qualitative research. The qualitative research will help generate the research hypothesis, which can be tested with quantitative methods. After the data is collected and analyzed with quantitative methods, a set of qualitative methods can be used to dive deeper into the data to better understand what the numbers truly mean and their implications. The qualitative techniques can then help clarify the quantitative data and also help refine the hypothesis for future research. Furthermore, with qualitative research, researchers can explore poorly studied subjects with quantitative methods. These include opinions, individual actions, and social science research.

An excellent qualitative study design starts with a goal or objective. This should be clearly defined or stated. The target population needs to be specified. A method for obtaining information from the study population must be carefully detailed to ensure no omissions of part of the target population. A proper collection method should be selected that will help obtain the desired information without overly limiting the collected data because, often, the information sought is not well categorized or obtained. Finally, the design should ensure adequate methods for analyzing the data. An example may help better clarify some of the various aspects of qualitative research.

A researcher wants to decrease the number of teenagers who smoke in their community. The researcher could begin by asking current teen smokers why they started smoking through structured or unstructured interviews (qualitative research). The researcher can also get together a group of current teenage smokers and conduct a focus group to help brainstorm factors that may have prevented them from starting to smoke (qualitative research).

In this example, the researcher has used qualitative research methods (interviews and focus groups) to generate a list of ideas of why teens start to smoke and factors that may have prevented them from starting to smoke. Next, the researcher compiles this data. The research found that, hypothetically, peer pressure, health issues, cost, being considered "cool," and rebellious behavior all might increase or decrease the likelihood of teens starting to smoke.

The researcher creates a survey asking teen participants to rank how important each of the above factors is in either starting smoking (for current smokers) or not smoking (for current nonsmokers). This survey provides specific numbers (ranked importance of each factor) and is thus a quantitative research tool.

The researcher can use the survey results to focus efforts on the one or two highest-ranked factors. Let us say the researcher found that health was the primary factor that keeps teens from starting to smoke, and peer pressure was the primary factor that contributed to teens starting smoking. The researcher can go back to qualitative research methods to dive deeper into these for more information. The researcher wants to focus on keeping teens from starting to smoke, so they focus on the peer pressure aspect.

The researcher can conduct interviews and focus groups (qualitative research) about what types and forms of peer pressure are commonly encountered, where the peer pressure comes from, and where smoking starts. The researcher hypothetically finds that peer pressure often occurs after school at the local teen hangouts, mostly in the local park. The researcher also hypothetically finds that peer pressure comes from older, current smokers who provide the cigarettes.

The researcher could further explore this observation made at the local teen hangouts (qualitative research) and take notes regarding who is smoking, who is not, and what observable factors are at play for peer pressure to smoke. The researcher finds a local park where many local teenagers hang out and sees that the smokers tend to hang out in a shady, overgrown area of the park. The researcher notes that smoking teenagers buy their cigarettes from a local convenience store adjacent to the park, where the clerk does not check identification before selling cigarettes. These observations fall under qualitative research.

If the researcher returns to the park and counts how many individuals smoke in each region, this numerical data would be quantitative research. Based on the researcher's efforts thus far, they conclude that local teen smoking and teenagers who start to smoke may decrease if there are fewer overgrown areas of the park and the local convenience store does not sell cigarettes to underage individuals.

The researcher could try to have the parks department reassess the shady areas to make them less conducive to smokers or identify how to limit the sales of cigarettes to underage individuals by the convenience store. The researcher would then cycle back to qualitative methods of asking at-risk populations their perceptions of the changes and what factors are still at play, and quantitative research that includes teen smoking rates in the community and the incidence of new teen smokers, among others. [14] [15]

Qualitative research functions as a standalone research design or combined with quantitative research to enhance our understanding of the world. Qualitative research uses techniques including structured and unstructured interviews, focus groups, and participant observation not only to help generate hypotheses that can be more rigorously tested with quantitative research but also to help researchers delve deeper into the quantitative research numbers, understand what they mean, and understand what the implications are. Qualitative research allows researchers to understand what is going on, especially when things are not easily categorized. [16]

• Issues of Concern

As discussed in the sections above, quantitative and qualitative work differ in many ways, including the evaluation criteria. There are four well-established criteria for evaluating quantitative data: internal validity, external validity, reliability, and objectivity. Credibility, transferability, dependability, and confirmability are the correlating concepts in qualitative research. [4] [11] The corresponding quantitative and qualitative concepts can be seen below, with the quantitative concept on the left and the qualitative concept on the right:

• Internal validity: Credibility
• External validity: Transferability
• Reliability: Dependability
• Objectivity: Confirmability

In conducting qualitative research, ensuring these concepts are satisfied and well thought out can mitigate potential issues from arising. For example, just as a researcher will ensure that their quantitative study is internally valid, qualitative researchers should ensure that their work has credibility. 

Indicators such as triangulation and peer examination can help evaluate the credibility of qualitative work.

• Triangulation: Triangulation involves using multiple data collection methods to increase the likelihood of getting a reliable and accurate result. In our above magic example, the result would be more reliable if we interviewed the magician, backstage hand, and the person who "vanished." In qualitative research, triangulation can include telephone surveys, in-person surveys, focus groups, and interviews and surveying an adequate cross-section of the target demographic.
• Peer examination: A peer can review results to ensure the data is consistent with the findings.

A "thick" or "rich" description can be used to evaluate the transferability of qualitative research, whereas an indicator such as an audit trail might help evaluate the dependability and confirmability.

• Thick or rich description:  This is a detailed and thorough description of details, the setting, and quotes from participants in the research. [5] Thick descriptions will include a detailed explanation of how the study was conducted. Thick descriptions are detailed enough to allow readers to draw conclusions and interpret the data, which can help with transferability and replicability.
• Audit trail: An audit trail provides a documented set of steps of how the participants were selected and the data was collected. The original information records should also be kept (eg, surveys, notes, recordings).

One issue of concern that qualitative researchers should consider is observation bias. Here are a few examples:

• Hawthorne effect: The effect is the change in participant behavior when they know they are being observed. Suppose a researcher wanted to identify factors that contribute to employee theft and tell the employees they will watch them to see what factors affect employee theft. In that case, one would suspect employee behavior would change when they know they are being protected.
• Observer-expectancy effect: Some participants change their behavior or responses to satisfy the researcher's desired effect. This happens unconsciously for the participant, so it is essential to eliminate or limit the transmission of the researcher's views.
• Artificial scenario effect: Some qualitative research occurs in contrived scenarios with preset goals. In such situations, the information may not be accurate because of the artificial nature of the scenario. The preset goals may limit the qualitative information obtained.
• Clinical Significance

Qualitative or quantitative research helps healthcare providers understand patients and the impact and challenges of the care they deliver. Qualitative research provides an opportunity to generate and refine hypotheses and delve deeper into the data generated by quantitative research. Qualitative research is not an island apart from quantitative research but an integral part of research methods to understand the world around us. [17]

• Enhancing Healthcare Team Outcomes

Qualitative research is essential for all healthcare team members as all are affected by qualitative research. Qualitative research may help develop a theory or a model for health research that can be further explored by quantitative research. Much of the qualitative research data acquisition is completed by numerous team members, including social workers, scientists, nurses, etc. Within each area of the medical field, there is copious ongoing qualitative research, including physician-patient interactions, nursing-patient interactions, patient-environment interactions, healthcare team function, patient information delivery, etc. 

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Disclosure: Steven Tenny declares no relevant financial relationships with ineligible companies.

Disclosure: Janelle Brannan declares no relevant financial relationships with ineligible companies.

Disclosure: Grace Brannan declares no relevant financial relationships with ineligible companies.

This book is distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ), which permits others to distribute the work, provided that the article is not altered or used commercially. You are not required to obtain permission to distribute this article, provided that you credit the author and journal.

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Action Research

Action research can be defined as “an approach in which the action researcher and a client collaborate in the diagnosis of the problem and in the development of a solution based on the diagnosis” [1] . In other words, one of the main characteristic traits of action research relates to collaboration between researcher and member of organisation in order to solve organizational problems.

Action study assumes social world to be constantly changing, both, researcher and research being one part of that change. [2] Generally, action researches can be divided into three categories: positivist, interpretive and critical.

Positivist approach to action research , also known as ‘classical action research’ perceives research as a social experiment. Accordingly, action research is accepted as a method to test hypotheses in a real world environment.

Interpretive action research , also known as ‘contemporary action research’ perceives business reality as socially constructed and focuses on specifications of local and organisational factors when conducting the action research.

Critical action research is a specific type of action research that adopts critical approach towards business processes and aims for improvements.

The following features of action research need to be taken into account when considering its suitability for any given study:

• It is applied in order to improve specific practices.  Action research is based on action, evaluation and critical analysis of practices based on collected data in order to introduce improvements in relevant practices.
• This type of research is facilitated by participation and collaboration of number of individuals with a common purpose
• Such a research focuses on specific situations and their context

Advantages of Action Research

• High level of practical relevance of the business research;
• Can be used with quantitative, as well as, qualitative data;
• Possibility to gain in-depth knowledge about the problem.

Disadvantages of Action Research

• Difficulties in distinguishing between action and research and ensure the application of both;
• Delays in completion of action research due to a wide range of reasons are not rare occurrences
• Lack of repeatability and rigour

It is important to make a clear distinction between action research and consulting. Specifically, action research is greater than consulting in a way that action research includes both action and research, whereas business activities of consulting are limited action without the research.

Action Research Spiral

Action study is a participatory study consisting of spiral of following self-reflective cycles:

• Planning in order to initiate change
• Implementing the change (acting) and observing the process of implementation and consequences
• Reflecting on processes of change and re-planning
• Acting and observing

Kemmis and McTaggart (2000) do acknowledge that individual stages specified in Action Research Spiral model may overlap, and initial plan developed for the research may become obselete in short duration of time due to a range of factors.

The main advantage of Action Research Spiral model relates to the opportunity of analysing the phenomenon in a greater depth each time, consequently resulting in grater level of understanding of the problem.

Disadvantages of Action Research Spiral model include its assumption each process takes long time to be completed which may not always be the case.

My e-book,  The Ultimate Guide to Writing a Dissertation in Business Studies: a step by step assistance  offers practical assistance to complete a dissertation with minimum or no stress. The e-book covers all stages of writing a dissertation starting from the selection to the research area to submitting the completed version of the work within the deadline.

References 

[1] Bryman, A. & Bell, E. (2011) “Business Research Methods” 3 rd  edition, Oxford University Press

[2] Collis, J. & Hussey, R. (2003) “Business Research. A Practical Guide for Undergraduate and Graduate Students” 2nd edition, Palgrave Macmillan

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• Published: 22 August 2024

To share or not to share, that is the question: a qualitative study of Chinese astronomers’ perceptions, practices, and hesitations about open data sharing

• Jinya Liu   ORCID: orcid.org/0000-0002-9804-8752 1 ,
• Kunhua Zhao 2 , 3 ,
• Liping Gu 2 , 3 &
• Huichuan Xia   ORCID: orcid.org/0000-0002-0838-7452 1  

Humanities and Social Sciences Communications volume  11 , Article number:  1063 ( 2024 ) Cite this article

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• Science, technology and society
• Social policy

Many astronomers in Western countries may have taken open data sharing (ODS) for granted to enhance astronomical discoveries and productivity. However, how strong such an assumption holds among Chinese astronomers has not been investigated or deliberated extensively. This may hinder international ODS with Chinese astronomers and lead to a misunderstanding of Chinese astronomers’ perceptions and practices of ODS. To fill this gap, we conducted a qualitative study comprising 14 semi-structured interviews and 136 open-ended survey responses with Chinese astronomers to understand their choices and concerns regarding ODS. We found that many Chinese astronomers conducted ODS to promote research outputs and respected it as a tradition. Some Chinese astronomers have advocated for data rights protection and data infrastructure’s further improvement in usability and availability to guarantee their ODS practices. Still, some Chinese astronomers agonized about ODS regarding the validity of oral commitment with international research groups and the choices between international traditions and domestic customs in ODS. We discovered two dimensions in Chinese astronomers’ action strategies and choices of ODS and discussed their descriptions and consequences. We also proposed the implications of our research for enhancing international ODS in future work.

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Citizen scientists—practices, observations, and experience

Perceived benefits of open data are improving but scientists still lack resources, skills, and rewards

A focus groups study on data sharing and research data management

Introduction.

Open data sharing (ODS) emphasizes scientific data’s availability to the public beyond its usability and distribution within academic communities (UNESCO, 2021 ). ODS has become increasingly significant since the Big Data era has engendered a paradigm shift towards data-intensive science (Tolle et al., 2011 ), and ODS has promoted data-intensive science to incorporate all stakeholders, such as researchers, policymakers, and system designers to address data processing and utilization issues collectively (Kurata et al., 2017 ; Zuiderwijk et al., 2024 ). Meanwhile, ODS has improved scientific discovery and productivity since different governments and funding agencies have endorsed ODS and published policies to facilitate it (Lamprecht et al., 2020 ). For example, the UK Research and Innovation (UKRI) issued the “Concordat on open research data” in 2016 to ensure that research data gathered and generated by the UK research community must be openly available to the public (UK Research and Innovation, 2016 ). The Chinese government published a “Scientific Data Management Methods” policy in 2018, requiring government-funded research to share its data with the public (General Office of the State Council of China, 2018 ). Besides such government initiatives, the scientific community has also proposed guiding principles for ODS, such as the “FAIR principles” to facilitate data sharing in respect of Findability, Accessibility, Interoperability, and Reuse (Wilkinson et al., 2016 ).

Astronomy is data-intensive and has long been regarded as a prime model of ODS for other scientific fields. For example, the famous Large Synoptic Survey Telescope (LSST) project has committed to real-time ODS after its start-up in 2025 and has released early survey data since June 2021 (Guy et al., 2023 ). Scholars have conducted a few studies to dig out the good practices of ODS in astronomy and found that ODS has a long tradition in astronomy supported by its well-established knowledge infrastructure and data policies (Zuiderwijk and Spiers, 2019 ; Borgman et al., 2021 ). Still, scholars found that some astronomers were hesitant to conduct ODS due to the high reward expectations (e.g., acknowledgment, institutional yearly evaluation, extra citation) and extra efforts (e.g., additional data description) required in ODS practices (Zuiderwijk and Spiers, 2019 ; Kim and Zhang, 2015 ); some astronomers also raised barriers about the usability and availability of data infrastructure to support ODS practices (Pepe et al., 2014 ).

Despite the ODS tradition in astronomy, researchers’ motivations and barriers to ODS may differ based on their cultural contexts. Most empirical studies of ODS have been conducted in Western and developed countries (Genova, 2018 ). Whether these findings hold in non-Western cultures deserves further exploration. Chinese culture and customs differ from Western ones, which may impose distinctive influences on Chinese people’s perspectives and behaviors. For example, Confucianism often renders Chinese individual researchers stick to collectivism or the societal roles assigned to them (Jin and Peng, 2021 ), which is less common in Western culture or academia to our knowledge. Also, scientific research paradigms have originated from and situated in Western culture for a long time. They call for critical examinations and alternative perspectives at the individual and societal or cultural levels, and ODS has been regarded as an essential lens to deliberate it (Serwadda et al., 2018 ; Bezuidenhout and Chakauya, 2018 ; Zuiderwijk et al., 2024 ).

Besides our concerns about cultural and research paradigm differences, Chinese astronomers’ distinctive characteristics have also motivated us to conduct this study. First, based on our prior experience with some Chinese astronomers, we have observed that Chinese astronomers follow enclosed or independent data-sharing norms that are uncommon to researchers in other disciplines. Their research seems to be more international than domestic. Since a slogan from the Chinese government has influenced many research disciplines (including ours) in China, advocating Chinese scholars to “Write your paper on the motherland” (Wang et al., 2024 ), we wondered how such propaganda would impact Chinese astronomers’ attitudes and behaviors. Second, a recent study has revealed that some Chinese astronomers struggled with ODS because they respected it as a tradition on the one hand and desired to gain career advantages (e.g., more data citations) on the other (Liu J, 2021). This finding contrasts another recent study’s conclusion that Chinese early career researchers (ECRs) (in non-astronomy disciplines) would only welcome ODS if the evaluation system rewarded them (Xu, et al., 2020 ). Hence, we wanted to investigate Chinese astronomers’ motivations and barriers regarding ODS further.

Finally, though ODS has been well-acknowledged internationally, it has not been studied or implemented extensively in most research disciplines in China, with astronomy as a rare exception. Hence, we posited that research about ODS in astronomy might shed light on other research disciplines’ popularization of ODS in China. In addition, previous studies on ODS in China have primarily focused on the Chinese government’s open data policies, infrastructure conditions, and management practices (Zhang, et al., 2022 ; Huang et al., 2021 ). To the best of our knowledge, little attention has been paid to Chinese researchers’ perceptions and practices. Thus, we wanted to conduct an exploratory investigation with Chinese astronomers to fill this gap and foster international ODS and research collaboration in Chinese astronomy and other research disciplines more broadly.

With these motivations in mind, we proposed the following research questions.

How do Chinese astronomers perceive and practice open data sharing?

Why do some Chinese astronomers hesitate over the issue of open data sharing?

To address those research questions, we conducted a qualitative study comprising 14 semi-structured interviews and 136 open-ended survey responses with Chinese astronomers to understand their practices and concerns regarding ODS. We found that many Chinese astronomers conducted ODS to promote research outputs and respected it as a tradition. Some Chinese astronomers have advocated for data rights protection and data infrastructure’s further improvement in usability and availability to guarantee their ODS practices. Still, some Chinese astronomers agonized about ODS regarding the validity of oral commitment with international research groups and the choices between international traditions and domestic customs in ODS. We discovered two dimensions in Chinese astronomers’ action strategies and choices of ODS and discussed these findings and implications. This study makes the following contributions. First, it provides a non-Western viewpoint for global ODS in astronomy and recommendations for advancing global and Chinese ODS policies and practices. Second, it reveals Chinese astronomers’ concerns, motivations, and barriers to conducting ODS. This may inspire domestic government, international research policymakers, and ODS platforms and practitioners to empathize with and support Chinese astronomers. Finally, this study may shed light on implementing ODS in other research disciplines in China, which has not been popular.

Literature review

The background of ods in science.

The open data movement in scientific communities was initiated at the beginning of the 21st century (e.g., Max Planck Society, 2003) (Tu and Shen, 2023 ). ODS, also known as open research data, advocates that the openness of scientific data to the public is imperative to science (UNESCO, 2021 ; Fox et al., 2021 ). Prior research has inquired about researchers’ intrinsic and extrinsic motivations for ODS. Intrinsic motivations include personal background and ethical perspectives. For example, a researcher’s personal background (research experience, gender, position, age, etc.) has been found to affect their ODS preferences, and significant differences have been observed in research experience (Zuiderwijk and Spiers, 2019 ; Digital Science et al., 2024 ). Also, a researcher’s ethical stance influences their ODS practices. Some researchers conduct ODS because they want to benefit the research community and promote reciprocity among data stakeholders, such as data producers, funders, and data users (Lee et al., 2014 ; Ju and Kim, 2019 ). Extrinsic motivations for ODS include incentive policies, data infrastructure, and external pressures from funders, journals, or community rules. Incentive policies, such as the promise of data citation and the rewarding credit from their institutions, effectively enhance ODS (Dorch et al., 2015 ; Popkin, 2019 ). Also, a well-established infrastructure could facilitate ODS by reducing its cost (Kim and Zhang, 2015 ). Moreover, regulations from researchers’ stakeholders (e.g., journals and funders) press their ODS practices as well. One example is developing data policies. Kim and Stanton proposed that journal regulative pressure has significantly positive relationships with ODS behaviors (Kim and Stanton, 2016 ).

Despite the motivations, researchers in ODS still have valid justifications for not conducting such practices (Zuiderwijk et al., 2024 ; Boeckhout et al., 2018 ). Sayogo and Pardo categorized those barriers into (1) technological barriers, (2) social, organizational, and economic barriers, and (3) legal and policy barriers (Sayogo and Pardo, 2013 ). More specifically, at the individual level, Houtkoop et al. found that ODS was uncommon in psychology due to psychologists’ insufficient training and extra workload (Houtkoop et al., 2018 ). Meanwhile, Banks et al. indicated that researchers in organizational research were afraid of exposing the quality of their data (Banks et al., 2022 ). In addition, researchers’ ethical concerns also influence their ODS practices, primarily privacy and fairness issues. Walsh et al. identified the privacy risks related to identity, attribute, and membership disclosure as the main ethical concerns about ODS (Walsh et al., 2018 ). Anane et al. worried that ODS could compromise fairness because some new or busy researchers might lose their data rights during the critical post‐first‐publication period (Anane-Sarpong et al., 2020 ). At the societal level, inadequate data policies have failed to guarantee researchers’ data rights, and property rights are unclear. Enwald et al. proposed that researchers in physics and technology, arts and humanities, social sciences, and health sciences were concerned about legal issues (e.g., confidentiality and intellectual property rights), misuse or misinterpretation of data, and loss of authorship (Enwald et al., 2022 ). Anane et al. found that data ownership was a crucial barrier affecting public health researchers’ willingness to share data openly (Anane-Sarpong et al., 2018 ).

The factors that influence astronomical ODS practices

Astronomy has been a prime example of ODS practices in scientific communities (Koribalski, 2019 ). For example, in gamma-ray astronomy, astronomers have explored how to render high-level data formats and software openly accessible and sharable for the astronomical community (Deil et al., 2017 ). In space-based astronomy, ODS has been an established norm in its research community for a long history (Harris and Baumann, 2015 ). In the interdisciplinary field of astrophysics, evidence has shown that papers with links to data, which also represent an approach of ODS, have a citation advantage over papers that did not link the data (Dorch et al., 2015 ). Additionally, many data archives in astronomy have been openly accessible to the public to increase their reusable value and potential for rediscovery (Rebull, 2022 ).

Prior studies have examined the socio-technical factors fostering ODS. Data policies support ODS implementations, and existing data infrastructure plays an essential role in ODS practices in astronomy (Pasquetto et al., 2016 ; Genova, 2018 ). For example, Reichman et al. attributed astronomy’s long tradition of ODS to its extensive and collaborative infrastructure (e.g., software and data centers) (Reichman et al., 2011 ). In practice, some famous astronomy organizations have built solid data infrastructures to support ODS, such as NASA Astrophysics Data System (ADS) and the International Virtual Observatory Alliance (IVOA) (Kurtz et al., 2004 ; Genova, 2018 ). Astronomy’s integrated knowledge infrastructure spanning decades and countries, encompassing observational data, catalogs, bibliographic records, archives, thesauri, and software, prompts global ODS among astronomers (Borgman et al., 2021 ). Many astronomers have a strong sense of duty to their research communities and the public. Thus, they would accept requests for data to assist colleagues and facilitate new scientific discoveries, which enhances ODS (Stahlman, 2022 ). Besides, astronomers perceived reciprocity influences their ODS practices. They aspire to improve their research outputs’ visibility and contribute to new, innovative, or high-quality research via ODS (Zuiderwijk and Spiers, 2019 ).

Still, some factors may hinder astronomers’ ODS practices. At the individual level, ODS may bring them extra learning load and academic reputation risks. For example, if astronomers perceive challenges in ODS or feel they need to acquire further knowledge, they may be less inclined to engage in such practices (Gray et al., 2011 ). Additionally, astronomers expressed concerns about the possibility of others discovering mistakes in the data (Zuiderwijk and Spiers, 2019 ). Pepe et al. also showed that the difficulty of sharing large data sets and the overreliance on non-robust, non-reproducible mechanisms for sharing data (e.g., via email) were the main hindrances to astronomers’ ODS practices (Pepe et al., 2014 ). At the societal level, an exponential increase in astronomical data volume has led to a continuous enrichment of utilization scenarios. ODS may involve data privacy or national security issues, especially when such data is integrated with other datasets. Thus, Harris and Baumann regarded the primary concern in global ODS as safeguarding national security and establishing appropriate licensing mechanisms (Harris and Baumann, 2015 ).

The development of ODS in China

The Chinese government has recognized ODS as a national strategy in both scientific and public service domains. They issued the “Scientific Data Management Methods” in 2018 and “Opinions on Building a More Perfect System and Mechanism for the Market-oriented Allocation of Factors” in 2022. These policies require that data from government-funded research projects must be shared with the public according to the principle of “openness as the norm and non-openness as the exception” (General Office of the State Council of China, 2018 ; General Office of the State Council of China, 2024 ). The Chinese government applied the “hierarchical management, safety, and control” concept as ODS arrangements to realize a dynamic ordered open research data at the social level (Li et al., 2022 ).

At the institutional level, the Chinese Academy of Sciences (CAS) has been actively promoting infrastructure construction and institutional repositories to support ODS. For example, CAS has affiliated eleven out of twenty national-level data centers that are foundational for ODS in China since 2019. Meanwhile, many Chinese journals have published data policies requesting that researchers append their papers with open-access data. The National Natural Science Foundation of China (NSFC) has funded over 6000 data-intensive research programs, encouraging ODS among them in compliance with the NSFC’s mandate (Zhang et al., 2021 ). Regarding Chinese researchers’ attitudes and practices toward ODS, Zhang et al. have observed that Chinese data policies have shifted from focusing on data management to encompassing both data governance and ODS. This shift has shrunk the gap between Chinese researchers’ positive attitudes toward ODS and their less active ODS behaviors (Zhang et al., 2021 ). Driven by journal policies, Chinese researchers’ ODS behaviors have been encouraged. For example, Li et al. found that more than 90% of the published dataset of ScienceDB is also paper-related data and proposed that the pressure from journals has been the main driving force for researchers to conduct ODS (Li et al., 2022 ). ScienceDB (Science Data Bank) is a general-purpose repository in China that publishes scientific research data from various disciplines (Science Data Bank, 2024 ).

Methodology

We conducted a qualitative study comprising 14 interviews and 136 open-ended survey questions with Chinese astronomers from 12 institutions. Our interview questions were semi-structured. Some were framed from the existing literature, and others were generated during the interviews based on the interviewees’ responses. Our open-ended questions are extended from a recent survey on data management services in Chinese astronomy (Liu, 2021 ). Table 1 depicts the formation of our interview questions that served as the major source of our research data. We acknowledge that the interviewees’ responses could be influenced by questions and context during the interview and tried to avoid such biases with the following strategies. First, although Chinese astronomers were hard to contact and recruit, we did our best to diversify our interview sample. Our interviewed Chinese astronomers included researchers and practitioners in observatories, scholars and Ph.D. students in astronomy at top universities in China, and researchers in astronomical research centers. Second, we conducted our interviews in different contexts, such as on campus, in observatories, at research centers, and over phones. Thus, we tried to de-contextualize our interview questions to reduce potential biases. Finally, our qualitative data and analysis were not only from interviews but also from our previous survey. We used the interview and survey data to corroborate and complement each other.

Data collection and analysis

Our interviews were conducted in person or via WeChat video. They lasted 30–45 min and were recorded and fully transcribed. Our recruitment was challenging and time-consuming due to COVID-19 and the limited number of Chinese astronomers available for the interview. We have obtained their informed consent and have followed strict institutional rules to protect their privacy and data confidentiality. In addition, we conducted a survey using the online platform ‘Survey Star’ and obtained responses from 136 Chinese astronomers. For the scope of this paper, we focus on reporting qualitative data.

We kept our first round of data analysis, including notetaking and transcription, simultaneous with the interview progress. Meanwhile, we have fully transcribed and translated the interview recordings in Chinese into verbatim in English. As for the data analysis part, we employed the thematic analysis technique to extract and analyze themes from the interview transcripts (The interviewees are numbered with the letter P) and open-ended survey responses (The survey responses are numbered with the letter Q). Thematic analysis is well-suited for analyzing interview transcripts and open-ended survey responses (Braun and Clarke, 2006 ). We referenced Braun and Clarke’s recommended phases and stages of the analysis process (Braun and Clarke, 2006 ). First, we read through transcriptions and highlight meaning units. Simultaneously, we conducted coding and identified participants’ accounts, which were presented in the form of notes. Second, we categorized the codes and subsequently attributed them with themes that corresponded to ethical concerns. Third, we verified the themes by having them reviewed by two additional authors to ensure high accuracy in our analysis. Finally, we linked our themes with existing literature to provide a more comprehensive narrative of our findings. Table 2 lists the demographic information of the interviewees.

We referenced Stamm et al.’s work to categorize the career stages of the Chinese astronomers we interviewed (Stamm et al., 2017 ). As shown in Table 2 , Most interviewees fall into the Senior-career stage because they have rich research experiences and resources in ODS.

Three types of Chinese astronomers’ behaviors at different ODS stages

We categorize the Chinese astronomers’ ODS behaviors into three types at different stages of ODS. First, Chinese astronomers mentioned that one type of ODS behavior is making the data publicly available on a popular platform (e.g., Github, NASA ADS, arXiv) or data centers after the proprietary data period has expired. The proprietary data period, or the exclusive data period, refers to the time between researchers first accessing the data and publishing their findings. This period typically ranges from one year to two years in astronomy, which aims to cover a normal and complete astronomical research cycle. P13 explained:

The data is not in our hands. After we use the telescope to complete the observations, the data will be stored in the telescope’s database. During the proprietary period (12 months), only you can view it. After the proprietary data period has passed, anyone can view it. (P13)

She meant that the raw data produced by astronomers were stored by the builders, who were also responsible for making those data visible to the public when the proprietary data period had expired. Zuiderwijk and Spiers’s survey has also revealed that astronomers seldom store raw data due to their inability to build a data center. Consequently, astronomers often do not influence data-sharing decisions directly but only propose data collection ideas (Zuiderwijk and Spiers, 2019 ).

Secondly, Chinese astronomers also regraded sharing the data with research teams or individuals upon their requests during the proprietary data period, which is also feasible. For example, P5, said:

I published one paper using research data whose proprietary period hasn’t expired. If someone emailed me to inquire whether they could obtain the data for “Figure 2” [here P5 referred to an exemplary figure in her previous publication]. I usually send the data to them. It is common [in astronomy] to communicate with the author via email to consult their willingness toward ODS. (P5)

P5 assumed that sharing data privately was allowed and common among astronomers when the proprietary data period had not yet expired. To some extent, P5 also transformed this private approach toward a visible approach by making his processed data public and publishing it on open platforms.

P11 added the reason why astronomers used this private approach:

The data is not immediately made available. There is a proprietary data period of one or two years. Priority is given to the direct contributors to use the data and produce the first batch of scientific results. After the proprietary data period has expired, others were allowed to discover the value of the data jointly…Other astronomers may also be interested in the data during the proprietary data period. After all, during this period, others were unable to conduct observations and produce data. (P11)

P11 explained that during the period when he applied for observation, others could not produce the data by using the same telescope. However, they might still be interested in such data. Thus, he might share their research data privately with other astronomers if he deemed it necessary for the other astronomers’ research.

Finally, besides the open sharing of research data, two other astronomers also introduced the third type of ODS behavior, the open sharing of research software, tools, and codes. P12 explained:

When the project was completed, project funders required all the research data to be submitted to a certain location for public use. We also needed to submit the software, tools, and related codes developed by astronomers. (P12)

According to P12, ODS is not merely about data per se but also its associated processing tools and accompaniment.

Another astronomer, P10, mentioned that astronomers may also share their software openly to enhance their research influence. P10 said:

Astronomers may openly share their programs in theoretical research and data simulation, particularly simulation programs or source files. They create open-source materials related to their articles and then make their software or related models available online. They also require acknowledgment if someone uses them later. Nowadays, many astronomers use this method for ODS. (P10)

Individual factors concerning Chinese astronomers’ motivations for ODS

Ods is a tradition and duty.

Twelve Chinese astronomers also mentioned that ODS was a traditional norm in astronomy, and they have been obeying it since they entered this scientific field. P11 said:

We have known a traditional norm since we started working in this field. That is, every time you apply for telescope observations and obtain data, this data must be made public one year later. Even if you have not completed your research or published a paper by then, the data will still be made public. For us astronomers, ODS is a natural practice and meaningful endeavor. We believe that astronomy is a role model of ODS for other research fields to follow. (P11)

Four Chinese astronomers also introduced the influence of the tradition of ODS on their motivations for ODS. For example, P10 said:

In the past, I have obtained data of my interest from other astronomers by emailing them. Therefore, if someone approaches me for data, I would also be willing to provide it. (P10)

Another two astronomers elaborated that they acknowledge the ODS tradition due to its benefit to both astronomers and telescopes. P1 said:

According to the international convention, to promote the influence of the telescope and enrich its research outputs, the data is released to the public based on different proprietary data periods. Each data release includes not only raw data but also data products generated by technical personnel processing the raw data. (P1)

I do not process raw data; instead, I typically utilize data products generated by telescopes. These data products, which are openly available in the public domain, assist individuals like me who lack technical expertise in processing raw data to conduct scientific research. Thus, we must also acknowledge the telescope’s contribution when publishing our findings. This is the norm in astronomy. (P13)

P1’s and P13’s opinions were common, which elaborated that telescopes have offered astronomers different kinds of data, enhancing their potential research outputs. In return, when researchers utilize the data generated by telescopes, they also contribute to the telescope’s influence and reputation.

It is worth noting that this tradition is also in telescopes’ data policies, which influences Chinese telescopes’ data proprietary periods setting. For example, the Chinese astronomy projects LAMOST and FAST release data policies that mention the proprietary data period following international conventions. As indicated by P6, the international convention typically observes the proprietary data period of six months to one and a half years.

Six Chinese astronomers believed that ODS is an established tradition in astronomy and ought to be respected and enacted as a duty without considering external factors or consequences. For example, P8, mentioned that:

Astronomy is a very pure discipline without economic benefit, and we have the tradition of ODS. Therefore, they state their data source or post a link to their data directly. My willingness to conduct ODS is also influenced by this atmosphere. Besides that, I regard ODS as a basic requirement because data should be tested [via ODS]. (P8)

Another two astronomers considered ODS in astronomy the nature of science, which motivated them to pursue the goal of openness persistently. For example, P11 said:

Astronomy exemplifies a characteristic of being borderless, where there is a strong inclination towards open academic exchange and sharing of resources and tools. Additionally, astronomy is pure due to its non-profit nature. Thus, astronomers have always maintained simplicity, leading to a culture of openness. (P11)

ODS brings beneficial consequences

Still, four Chinese astronomers hoped to improve their research influence and citations through ODS, especially the research to which they had devoted the most effort. For example, P10 said:

Astronomers not only release their data but also the software or code to process it. This is because if other astronomers use my software and code to process the data, they would also cite the papers with my shared software and code. This will increase the influence of my papers and software or code. (P10)

A similar perspective came from our survey responses Q19, Q22, Q34, and Q47, who also perceived that ODS could improve the research impact of their papers and data. For example, Q22 stated:

I have encountered situations where other researchers requested access to my data. One of the reasons I am willing to share data [with them] is to increase my paper citations. (Q22)

Additionally, some Chinese astronomers practiced ODS to replicate and validate their research. For example, Q26 said:

The primary reason I endorse ODS is to replicate my data analysis by peers and enable independent verification of my research outputs. (Q26)

ODS engenders reciprocity and collaboration opportunities

Fourteen Chinese astronomers mentioned that ODS could increase their research outputs and provide possibilities to obtain other astronomers’ data, thereby promoting the prosperity of research outputs in the entire astronomy community. More importantly, they have established a new type of collaborative opportunity through ODS when data are sufficient but resources/capacities to utilize data are limited. For example, P12 expressed that ODS had a positive impact on the research outputs of the scientific community:

An astronomer I respect once stated that initially, they wanted to conceal all research data, but this proved impossible due to the vast amount of data produced by the telescope. As a result, they released all the data from their large-scale projects. The outcome of this ODS behavior rendered explosive growth in research outputs. (P12)

Another two astronomers noted that ODS was essential to cultivate more astronomers to form collaborative efforts to increase research outputs in the scientific community. P6 said:

The data generated by telescopes used to observe transient events have not been subject to the proprietary data period. Once I observe such events, I will encourage other researchers to join in and rapidly identify these unexpected phenomena, facilitating subsequent observations using various telescopes to maximize scientific output as quickly as possible. (P6)

P6 elaborated that astronomers rely on collaborative efforts for special observations, such as discovering new stars, which maximizes the utilization of global telescope resources. This motivation strengthens collaborations among astronomers from different research teams. P14 added:

New events [e.g., new star discoveries] in astronomy often occur in transience. If I do not share information about these events, other astronomers will not know about them. With limited resources, I may be unable to observe them through other telescopes. However, sharing preliminary data about these events can maximize global resources. This allows for a collaborative effort to observe the event using resources from around the world. (P14)

P14 stated that ODS has the potential to appeal to more astronomers to research contributions through their subsequent and collective efforts based on the initial observation. P14’s opinion echoed Reichman et al.’s findings, which revealed that extensive and collaborative infrastructure was the primary driver behind the adoption of ODS (Reichman et al., 2011 ).

Prior research also indicated that limited resources and capacities would increase collaboration among astronomers in astrophysics research (Zuiderwijk and Spiers, 2019 ). A similar opinion also arose from our survey responses Q18, Q30, and Q52. For example, Q30 said:

I am good at processing data instead of writing papers. ODS can allow me to collaborate with someone who is good at writing papers to co-produce the research output. (Q30)

Societal factors concerning Chinese astronomers’ barriers to ODS

The limitations of verbal agreements in international collaboration.

Although most Chinese astronomers endorsed ODS, three were concerned about other astronomers who might have violated their initial commitments to using data for scientific purposes. For example, P7 commented:

I used to have experiences with foreign collaborators who violated their initial commitments, resulting in unpleasant consequences. Specifically, they promised in emails that they would process the data using a different approach from ours. However, they ended up using the same method and perspective as ours. There was not much to be said about it, as it was not illegal or against data policies’ regulations. It is a matter of trust and promises, and all I can do is not share data with them in the future. (P7)

P10 also added that often, the astronomers’ commitment to email correspondence had to rely on their self-discipline to materialize:

If the proprietary data period has not expired and you share the data with others, you have no control over what they do with it except to trust their promise in the email. This situation relies on the self-discipline of astronomers. (P10)

Three astronomers were also concerned about the validity of oral agreements about ODS. They referred to them as “gentlemen’s agreements.” For example, P14 explained:

In principle, data can be shared with others without a signed contract between us but based on the so-called gentleman’s agreement. Thus, some Chinese astronomers may not be willing to make their research data public because they must assume that everyone is a gentleman [to keep their promise], which may not always be the case as there are also scientists who are not accountable due to a highly competitive environment [in science]. (P14)

P14 regarded the “gentlemen’s agreements” as effective only to those who acted in good faith in fulfilling their commitments. They would not impose or presuppose any “ethical” constraints on collaborators. Hence, he noted that some astronomers were unwilling to share data openly within the proprietary data period because they did not trust the other astronomers’ accountability to fulfill their “gentlemen’s agreements.” Besides that, P6 explained the reason that astronomers have broken their commitments. He said:

In astronomy, some data policies have not been effectively constrained because it is impossible to encompass all subsequent data usage and collaboration situations at first…Also, there are many astronomy alliances. If you are not part of our alliance, you are not bound to commitments, which may lead to disputable issues. (P6)

Data is too dear to share immediately

Ten Chinese astronomers considered that the data they obtained possessed unique scientific values that could contribute to their publication priority and prolificity. Given the fact that publication priority, authorship order, and quantity are still the most important and prevalent factors in evaluating a scholar in China, it becomes comprehensible that these astronomers have expressed concerns about the risk of losing the ‘right of first publication’ if they openly share their processed data too soon. For example, P9 confessed:

I am unwilling to conduct ODS primarily because my research findings have not been published yet. I am concerned that ODS might lead to someone else publishing related findings before I do. (P9)

Similar concerns were also expressed in our survey responses Q42, Q46, and Q53. Q53 provided a more detailed explanation:

The individuals or organizations that produce data should have the right to use it first and only make it publicly available after a round of exploration and the publication of relevant research results. If the data is shared openly and completely from the outset, the number of people or organizations willing to invest time and money in obtaining data in the future will decrease since they can use data obtained by others instead of acquiring it by themselves. (Q53)

Another astronomer, P12, held a negative attitude toward ODS at the early stage of research because he was concerned that their data processing capacity was slower than the other research groups once the data was shared with them:

I put a lot of effort into processing data, and if my research findings have not been published but I release my data in three months [some international rules recommend astronomers to open their data as soon as possible], then someone with a more sophisticated data processing software may be able to write and analyze their research paper within a week because they already have the complete workflow prepared. This may upset the sharers who intended to publish a similar finding, as their work has been done so quickly [sooner than the sharer]. (P12)

A similar opinion could be seen in our survey response Q46:

The scientific community should ensure that those who have worked hard to produce the data also have the priority to publish their research findings before the data has been made publicly available. (Q46)

The disparities between the Chinese and foreign research infrastructures

Five Chinese astronomers expressed their concerns about the disparities between the Chinese and foreign research infrastructures. For example, P9 expressed his concern that adhering to international rules in astronomy might contradict the domestic rules in China due to national security and data confidentiality considerations. He said:

International organizations hope our country will lead in ODS, which may sometimes harm our interests. This is especially the case for the data produced through Chinese telescopes, which are published in international academic journals upon the international journal publishers’ requests because this data may involve confidential engineering tasks in Chinese telescopes that are subject to national security purposes. (P9)

Another astronomer, P4, also mentioned that astronomical data may include equipment parameters that may trigger national security concerns. Hence, she has undergone desensitization before conducting ODS:

Astronomical raw data are generated by the equipment directly and are categorized as first-level data [machine-generated data] in the data policies. More importantly, raw astronomical data should be processed before being opened to the public because the raw data may raise [national] security concerns and leakage equipment parameters. (P4)

P4’s concerns about national security are also reflected in China’s national data policies. For example, the Chinese government mandates the “hierarchical management, safety, and control” policy to supervise ODS to balance its order and dynamic (Li et al., 2022 ).

P8 added that Chinese astronomers are sometimes limited by national rules and domestic data infrastructure usability and accessibility. P8 said:

In some Chinese astronomical projects, only certain frequency bands are internationally permitted, and the first to occupy them claims ownership. Moreover, our data storage and ODS are limited by technical difficulties. We don’t have ODS platforms like NASA ADS. Even if there are, these platforms are currently not as recognized internationally as those abroad. Therefore, when astronomers publish papers or data, they default to submitting them to international platforms. (P8)

Societal factors concerning Chinese astronomers’ hesitations for ODS

The pressure from domestic data policies.

Five Chinese astronomers have mentioned that ODS is subject to the requirements of domestic data policies. Thus, they sense the pressure to conduct ODS. For example, P6 indicated that many astronomy projects in China were government-funded and required data sharing and submission conforming to government regulations as the priority.

Chinese telescopes are primarily funded by the government, as researchers have not yet had the ability to build a telescope on their own. The entire Chinese population is considered one collective, while those non-Chinese are another. The Chinese government aims to promote ODS to data generated by projects funded by public funds. If researchers have not submitted research data to the government-delegated data center, it could potentially impact their subsequent research project approval. By contrast, some foreign telescopes are built by private institutions and may not have the option for ODS. (P6).

Another astronomer, P3, proposed that Chinese mandatory data policies prompt the ODS scale. However, complicated troubles remained.

Our data policies are mandatory, especially for projects funded by national grants. That is, if you don’t conduct ODS, your projects may not be accepted. The volume of ODS is rising consequently. However, the issues related to ODS still need to improve, such as the Chinese astronomers’ initiative willing to ODS is weak, and [sometimes] their open data cannot be reused. There is a need further to investigate Chinese researchers’ [ODS] behaviors, particularly to find the stimulations for them to conduct ODS proactively. (P3)

Besides, three Chinese astronomers shared that the traditional funding source in astronomy also motivated their ODS. P8 explained:

In China, astronomical data [from national telescopes] is mostly institutional and collective. One can apply to use a telescope at a particular institution to obtain astronomical data. The applications may receive different priorities, but the data is not privately owned. (P8)

P8 meant that Chinese astronomers relied on large telescope projects funded by the government. Consequently, the ownership of their observed data belongs to the collective astronomical community in China rather than individual astronomers or research teams.

The language prerequisite in astronomy

Three astronomers have also introduced the issue of a language prerequisite in scientific communication. For example, P12 explained:

[Modern] astronomy predominantly originated from developed nations. Consequently, our conferences, data, and textbooks are primarily in English. However, this can be a barrier for young Chinese astronomers who are not proficient in English. At least among the researchers around me, everyone contends that English is a necessary prerequisite for entering the field of astronomy. That is to say, the entry barrier for astronomy is very high. I termed it “aristocratic science” because it is difficult to conduct astronomical research without good equipment, proficient English, or substantial funding. (P12)

Another astronomer, P9, dismissed astronomical journals in Chinese because these journals would not be acknowledged in the international astronomy community:

I believe English is a strict prerequisite in astronomy. If your English is poor, you may be restricted from engaging in ODS communication. I support [the slogan] publishing in Chinese to enhance Chinese scholars’ international influence, but most astronomical research originates from the West and is primarily dominated by Western institutions. Besides that, domestic journals are not valuable enough for academic evaluation or promotion due to their low influence factor. (P9)

Finally, P13 added that if Chinese astronomers always use English in ODS, it might potentially clash with the academic discourse system in China.

Some people may wonder why, as Chinese researchers, we need to use English to communicate our work. From my personal perspective, of course, I fully support promoting our research discourse system using Chinese as the primary language. However, from a [scientific] communication standpoint, there are times when we need to collaborate with foreign astronomers or improve communication efficiency [in English]. (P13)

The awareness of a competitive environment

Four Chinese astronomers have expressed concerns about ODS due to the highly competitive scientific community to which they belong. For example, P14 stated:

The field we are currently working in is highly competitive, so we need to consider protecting our team’s efforts. If we release the data, there is a possibility that other researchers using more advanced software tools could publish their findings before us. (P14)

Another astronomer, P12, remarked that this competitive atmosphere varies depending on the research directions. He said:

Competition is inevitable but varies across research areas. I engaged in two research areas. One is characterized by intense competition, but the other is more friendly. The highly competitive research area has many researchers pursuing high-quality data and tackling cutting-edge topics. Sometimes, competing with those who publish first or faster becomes necessary. In addition, one kind of “Nei Juan” may exist, which is competing to see who can open data faster. Because the faster your proposal is promised, the sooner your observation project will be approved. (P12)

“Nei Juan” (a.k.a. involution) manifests a fierce but often unfruitful competition to catch up with colleagues, peers, and generations (Li, 2021 ). P12 acknowledged the competitive environment that would push him to publish first or faster but also regarded “Nei Juan” as not always bad for ODS. Still, P9 considered that the “Nei Juan” issue may arise because Chinese astronomers want to catch up with the international astronomical development phase.

Generally speaking, astronomy is relatively less “Nei Juan” compared to other disciplines. However, its rapid development has begun to become more intense. Particularly, Chinese astronomy is in a phase of catching up, characterized by a collaborative yet competitive atmosphere with the international community. Our national astronomical teams, as a collective, are exerting great efforts to excel in some major projects compared to their foreign counterparts, engaging in strenuous research endeavors. (P9)

However, another astronomer, P11, regarded that ODS meant not “the sooner, the better.” P11 argued:

Some data may have been obtained through instrument testing, and its quality is not particularly high, resulting in lower reliability. If it is made openly accessible immediately, users may not obtain accurate results. Besides, the raw data may contain variances or noises originating from different instruments, requiring standardized processing through software to transform it into [reliable] data products. Only then can scientific users and the public truly benefit from this data. (P11)

The interpretation of Chinese astronomers’ ODS motivations and behaviors

Chinese astronomers’ motivations and behaviors in ODS can be interpreted threefold. First, a few Chinese astronomers’ obedience to ODS is traditional. They value the tradition of ODS in astronomy and contend that it should be respected and obeyed as an intrinsic duty (Heuritsch, 2023 ). Also, they acknowledge the value of astronomical ODS practices for scientific research and the whole scientific community, which makes them devote themselves to such practices (e.g., P8, P12). Hence, for them, extrinsic principles (e.g., FAIR), policies (e.g., those from the Chinese government), or individual research outputs do not determine their ODS decisions and behaviors. As P11 said, he had learned and obeyed this tradition since he entered the field of astronomy. This finding in China corroborates Stahlman’s prior research, indicating that astronomers have a strong sense of duty to their research communities and the public (Stahlman, 2022 ). Still, we found it impressive because these Chinese astronomers adhere to ODS traditions, dismissing the government slogan “Write your paper on the motherland,” which is rare in other research disciplines (including ours) in China.

Second, many Chinese astronomers would evaluate the consequences of ODS. One evaluation lens is self-interest. For example, several Chinese astronomers (e.g., P6, P12) have pointed out that ODS can potentially increase individual research outputs and their academic reputation, which motivates them to do it. It is noteworthy that some Chinese astronomers increase research outputs through ODS, both in terms of their personal contributions and for the entire astronomy community. Their evaluation priority is their own data/paper citation over ODS practices. Another evaluation lens is reciprocity. Some Chinese astronomers (e.g., P1, P10) perceive that the data sharer and user roles in ODS among astronomers can be exchanged. An open data sharer can become a user, and vice versa, in different research projects and times. As P10 mentioned, many Chinese astronomers have received the benefits of ODS from other astronomers when they lacked data or resources. As a result, they aspire to contribute to the community by providing opportunities and resources for fellow astronomers who face challenges similar to those they did previously. Thus, they adopt ODS in a respectful manner, hoping to receive the same treatment in the future. Abele-Brehm et al.’s study has revealed that researchers tended to conduct ODS out of reward promises (Abele-Brehm et al., 2019 ). Our findings complement it by differentiating self-interest-oriented and reciprocity-oriented rewards from ODS.

Third, some Chinese astronomers’ choice of ODS can be interpreted as contractual. Without ODS, they cannot receive government funding or get their research proposal accepted, which may impede their research progress and contribution. This finding corroborates Zuiderwijk and Spiers’ research, highlighting the significance of resource constraints and individual expectations benefits, which they could get extra citation or potential collaboration opportunities as essential motivators for ODS in astronomy (Zuiderwijk and Spiers, 2019 ). Furthermore, the development of modern astronomy in China is relatively retarded compared to the U.S. or European counterparts. The Chinese government sponsors most astronomical projects with public funding, hoping to enhance Chinese astronomy through centralized power and resources. For example, in 2018, the Chinese government implemented a scientific data management policy mandating the sharing of research data generated by public funding (General Office of the State Council of China, 2018 ). Thus, Chinese astronomers in contract with government-funded telescopes must enact ODS.

The societal barriers to Chinese astronomers’ ODS practices

We identified a few societal barriers to Chinese astronomers’ ODS practices. First, insufficient data rights protection during ODS may hinder Chinese astronomers’ enthusiasm or trust in conducting ODS. For example, P6 has raised the concern that some astronomical data policies are typically formulated by scientific alliances and only bind members within project teams. Thus, astronomers who do not belong to these alliances do not need to obey these policies. Moreover, P10 and P14 both complained that though they had contributed much data, time, and effort, some global ODS practices relied on verbal agreements, which often lacked enforcement and easily compromised their data rights in an international project. This insufficient protection of data rights may give rise to conflicts of interest among collaborating parties, discouraging subsequent data-sharing practices among Chinese astronomers.

Second, a data infrastructure that is weak in its usability and accessibility may deter some Chinese astronomers from choosing ODS. As P8 remarked, Chinese open research data infrastructures have not been well developed regarding data usability and accessibility, which pushes domestic astronomers to publish data via foreign open research platforms. This concern partly reflects the reality of the underdevelopment of data infrastructure in China, indicating that most of China’s domestic research data repositories have yet to establish licenses, privacy, and copyright guidelines. (Li et al., 2022 ).

Additionally, we found that a highly competitive environment could potentially trigger “Nei Juan” related to competing for publication priority, which could also affect Chinese astronomers’ ODS attitudes and behaviors. Specifically, the increasing emphasis on academic performance has led many Chinese researchers into a “weird circle” of self-imposed pressure to publish papers continuously. This phenomenon is exacerbated by the tenure system in top Chinese universities, which has significantly shaped researchers’ academic work and day-to-day practices (Xu and Poole, 2023 ). Thus, within the intensely competitive scientific landscape and the dominant evaluation system for paper publications, Chinese astronomers may potentially prioritize rapid paper publication over ODS because when scientific resources and academic promotions are scarce, data is invaluable to a researcher. As implied in P14’s quote, some Chinese astronomers may delay or opt out of ODS unless their data rights and research benefits can be ensured.

Two dimensions in the action strategies in Chinese astronomers’ choices for ODS

Apart from the individual and societal factors that motivate or deter Chinese astronomers’ OBS behaviors, we have identified two dimensions in the action strategies that influence their choice of ODS. These two dimensions are presented and interpreted in Table 3 .

First, some Chinese astronomers hesitated to ODS because they had to choose between domestic customs and international traditions in astronomy, which might influence or even determine some Chinese astronomers’ behaviors concerning ODS. For example, several Chinese astronomers (e.g., P11, P13) prioritized compliance with domestic policies over international ones in determining where and how to implement ODS (Zhang et al., 2023). Besides, as explained by P4, almost all Chinese astronomers receive national funding, which would influence their ODS behaviors due to national funding agencies’ requirements for project commitment and applications. China’s “dual track” approach emphasizing data openness and national security simultaneously requires researchers to obey the “Openness as the normal and non-openness as the exception” principle (Li et al., 2022 ). Meanwhile, open data governance and open data movement have gradually impacted government policies as various national security and personal privacy issues are emerging (Arzberger et al., 2004 ). Despite this, ODS policies or concerns about national security and personal privacy may not be suitable for astronomy because astronomy rarely involves security and privacy issues (as highlighted by P9 and P12). As the discrepancy between domestic and international policy environments widens, choosing different norms may pressure Chinese astronomers’ ODS behaviors.

Second, we found some ethical problems related to ODS from the language prerequisite or preference in Chinese astronomy. As mentioned by P12, language has become an entrance bar in Chinese astronomy because astronomy is sort of “aristocratic science” in the sense that English proficiency is a prerequisite for anyone or any institution that wants to participate in astronomy research and practices seriously. Consequently, there is no comparable citizen science project in China to Galaxy Zoo or Zooniverse in the U.S., and local or private colleges in China cannot afford to establish astronomy as a scientific discipline in their institutions because many people in Chinese citizen science projects or below-the-top institutions are not proficient in English. Related to it, as mentioned by P9, domestic journals about astronomy in China are unanimously regarded as inferior and not valuable enough for academic evaluation or promotion. This phenomenon in Chinese astronomy is distinctive from the other research disciplines in China, where domestic journals are not “biased” based on publication language.

Third, domestic astronomy projects obeying international propriety data period policies may exert extra pressure or restraint on Chinese astronomers to conduct ODS. For example, the LAMOST and FAST projects in China follow international conventions in setting their propriety data period and ODS policies in English. As a result, Chinese astronomers who are poor in English would confront logistic hindrances in harnessing these domestic astronomy projects to share their data, ideas, and publications in Chinese. If they want to implement international ODS via LAMOST or FAST, they must spend extra time, effort, or funding translating their data and ideas into English, which may affect their time and resource allocation in the other research activities within the proprietary data period, such as ODS. Hence, we surmise that this language obstacle for some Chinese astronomers could demotivate or discourage them from ODS.

Fourth, some Chinese astronomers may choose between personal development and scientific advancement regarding ODS. First, it may be due to the adverse effects of the Chinese academic promotion system on some astronomers. In China, universities and research institutions typically use publication lists to evaluate academic performance and promotion (Cyranoski, 2018 ). As P14 mentioned, competition for research publication has been growing in some areas of astronomy (e.g., burst source). Some Chinese astronomers may withhold ODS to prioritize their data rights and timely publication. It may also be interpreted by a prevalent phenomenon in the Chinese academy nowadays called “Nei Juan.” Consequently, some Chinese scholars, including astronomers, are pushed to be competitive or “selfish” to increase their research publications, citation metrics, funding opportunities, and data rights. Prior works have found that researchers’ data-sharing willingness tends to be low when perceived competition is high (Acciai et al., 2023 ; Thursby et al., 2018 ), and researchers’ intrinsic motivation gradually weakens when researchers’ organizations implement accountability measures (such as contract signing) and increasingly pursue performance-oriented academic research (Gu and Levin, 2021 ). These findings may also explain some Chinese astronomers’ hesitation about ODS.

Last but not least, astronomy is highly international, and ODS can encourage collaboration among astronomers from different countries. Nevertheless, as mentioned by P7, some collaborators may compromise their promises for data use, which disincentivizes data sharers’ willingness for continuous ODS. Astronomers, through the joint observations of multiple telescopes, can collectively identify the underlying reasons behind astronomical phenomena and thereby promote scientific advancement. However, with the impact of “Nei Juan” and the limitations of verbal commitments, some Chinese astronomers may find it challenging to choose between ODS and prioritizing their academic interests.

Conclusion and implications for future research

Many astronomers in Western countries may have taken ODS for granted to enhance astronomical discoveries and productivity. However, how strong such an assumption holds among Chinese astronomers has not been investigated or deliberated extensively. This may hinder international ODS with Chinese astronomers and lead to a misunderstanding of Chinese astronomers’ perceptions and practices of ODS. Thus, in this paper, we reported our findings from 14 semi-structured interviews and 136 open-ended survey responses with Chinese astronomers about their motivations and hesitations regarding ODS. Our study found that many Chinese astronomers regarded ODS as an international and established duty to obey or reciprocity to harness. However, some Chinese astronomers would also agonize about ODS for data rights concerns, usable and accessible data infrastructure preferences, and “Nei Juan” or academic promotion pressures. Synthesizing these findings, we summarize them as Chinese astronomers’ concerns and choices between domestic customs and international traditions in ODS. Despite the findings, our research has several limitations. First, we still need more data to test and generalize our findings about ODS to Chinese scholars in other disciplines. Second, we have not conducted a comparative analysis of perceptions, concerns, and behavioral differences among astronomers in other countries. In the future, we intend to address this gap by conducting a global study to provide a more comprehensive understanding of ODS in science.

Our research has several implications for future work. First, we advocate for empathy and compromise between domestic customs and international traditions in Chinese astronomy. Undoubtedly, developed and English-speaking countries have been dominant in science and research paradigms for a long time. On the positive side, such dominance has established various traditions, such as ODS in astronomy, which are respected and obeyed by many scholars worldwide, such as many astronomers in China. On the negative side, such long-standing scientific dominance may trigger a developing country’s domestic countermeasures or competing policies, which can agonize some domestic researchers and impede global ODS. For example, as we have revealed, some Chinese astronomers had regarded astronomy as an “aristocratic science” and screened out Chinese astronomers or citizen science participants who were not proficient in English. Future research can investigate further the power dynamics between international traditions and domestic customs in other cultures or research disciplines beyond ODS in astronomy.

Second, we suggest that the international astronomy community publish more inclusive ODS rules that consider the societal contexts of researchers from different countries with different cultural or language backgrounds. Efforts should be made to minimize the reinforcement of one’s dominant position in scientific research through ODS, and to develop more inclusive, sustainable, and equitable rules that appeal to more advantaged countries to join. This may be achieved by providing different languages of ODS platforms, translation assistance to draft collaboration agreements, and multiple options for international collaboration and communication among astronomers from different countries. In this regard, the CARE (Collective benefits, Authority to control, Responsibility, and Ethics) principles serve as a good example (Global Indigenous Data Alliance, 2019 ). Also, we propose that the Chinese government, academic institutions, and funding agencies be more globally leading and open-minded to stimulate ODS, not merely within the border but endeavor to become a global leader or at least an essential stakeholder to promote knowledge sharing and scientific collaboration.

Third, our research findings indicate that individual ethical perspectives among astronomers play a significant role in guiding their ODS practices. To start, reciprocity effectively enhances ODS regardless of the established or domestic research policies. Thus, we suggest that policymakers in China consider emphasizing more on the reciprocity benefits and build a collaborative effort across the scientific community. As the qualitative data from our findings revealed, collaboration benefits from ODS are highly motivating for Chinese astronomers. Still, we have identified concerns among Chinese astronomers. For instance, they have highlighted concerns about the limitations of verbal commitments for ODS within the proprietary data period, potentially engendering “free-riders” in research. Further, we noticed that some Chinese astronomers conduct ODS based on their respect for this tradition and obey it as their duty without considering external factors such as individual interests or community benefits. We posit that this ethical perspective is aligned with deontology. Therefore, we suggest that stakeholders of ODS, such as the scientific community, research institutions and organizations, and ODS platform developers, could propose specific norms or mottos regarding the ODS tradition in astronomy to stimulate astronomers’ voluntary sense of duty to conduct it.

Finally, since we found that some astronomers conducted ODS primarily for self-interests in academia, efforts should be made to ensure that the rights of researchers in astronomy are protected and that they do not bear any risks caused by others (e.g., data misuse, verbal breach of contract). Future research can administer surveys or experiments to explore how significantly these individual factors impact astronomers’ ODS behaviors.

Data availability

The complete translated and transcribed data from our study is available at Peking University Open Research Data ( https://doi.org/10.18170/DVN/JLJGPF ).

Abele-Brehm AE, Gollwitzer M, Steinberg U, Schönbrodt FD (2019) Attitudes toward open science and public data sharing. Soc Psychol 50(4):252–260. https://doi.org/10.1027/1864-9335/a000384

Article   Google Scholar  

Acciai C, Schneider JW, Nielsen MW (2023) Estimating social bias in data sharing behaviours: an open science experiment. Sci Data 10(1):233. https://doi.org/10.1038/s41597-023-02129-8

Article   PubMed   PubMed Central   Google Scholar  

Anane-Sarpong E, Wangmo T, Tanner M (2020) Ethical principles for promoting health research data sharing with sub-Saharan Africa. Dev World Bioeth 20(2):86–95. https://doi.org/10.1111/dewb.12233

Article   PubMed   Google Scholar  

Anane‐Sarpong E, Wangmo T, Ward CL, Sankoh O, Tanner M, Elger BS (2018) You cannot collect data using your own resources and put It on open access”: perspectives from Africa about public health data‐sharing. Dev World Bioeth 18(4):394–405. https://doi.org/10.1111/dewb.12159

Arzberger P, Schroeder P, Beaulieu A, Bowker G, Casey K, Laaksonen L, Moorman D, Uhlir P, Wouters P (2004) Promoting access to public research data for scientific, economic, and social development. Data Sci J 3:135–152. https://doi.org/10.2481/dsj.3.135

Banks GC, Field JG, Oswald FL, O'Boyle EH, Landis RS, Rupp DE, Rogelberg SG (2019) Answers to 18 Questions About Open Science Practices. J Bus Psychol 34:257–270. https://doi.org/10.1007/s10869-018-9547-8

Bezuidenhout L, Chakauya E (2018) Hidden concerns of sharing research data by low/middle-income country scientists. Glob Bioeth 29(1):39–54. https://doi.org/10.1080/11287462.2018.1441780

Boeckhout M, Zielhuis GA, Bredenoord AL (2018) The FAIR guiding principles for data stewardship: fair enough? Eur J Hum Genet 26(7):931–936. https://doi.org/10.1038/s41431-018-0160-0

Borgman CL, Wofford MF, Golshan MS, Darch PT (2021) Collaborative qualitative research at scale: Reflections on 20 years of acquiring global data and making data global. J Assoc Inf Sci Technol 72(6):667–682. https://doi.org/10.1002/asi.24439

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. https://doi.org/10.1191/1478088706qp063oa

Cyranoski D (2018) China awaits controversial blacklist of ‘poor quality’ journals. Nature 562(7728):471–472. https://doi.org/10.1038/d41586-018-07025-5

Article   ADS   CAS   PubMed   Google Scholar  

Deil C, Boisson C, Kosack K, Perkins J, King J, Eger P, … & Lombardi S (2017, January) Open high-level data formats and software for gamma-ray astronomy. In AIP Conference Proceedings (Vol. 1792, No. 1). AIP Publishing

Digital Science, Hahnel M, Smith G, Schoenenberger H, Scaplehorn N, Day L (2024) The State of Open Data 2023 (Version 1). Digital Science. available at: https://doi.org/10.6084/m9.figshare.24428194.v1 . Accessed 10 March 2024

Dorch BF, Drachen TM, Ellegaard O (2015) The data sharing advantage in astrophysics. Proc Int Astron Union 11(A29A):172–175. https://doi.org/10.1017/S1743921316002696

Enwald H, Grigas V, Rudzioniene J, Kortelainen T (2022) Data sharing practices in open access mode: a study of the willingness to share data in different disciplines. Inform Res Int Electron J 27. https://doi.org/10.47989/irpaper932

Fox J, Pearce KE, Massanari AL, Riles JM, Szulc Ł, Ranjit YS, Gonzales LA (2021) Open science, closed doors? Countering marginalization through an agenda for ethical, inclusive research in communication. J Commun 71(5):764–784. https://doi.org/10.1093/joc/jqab029

General Office of the State Council of China (2018) “Scientific data management measures”, available at: http://www.gov.cn/home/2018-04/02/content_5279296.htm Accessed 11 June 2023

General Office of the State Council of China (2024) Opinions on building a more perfect system and mechanism for the market-oriented allocation of factors. available at: https://www.gov.cn/xinwen/2022-12/21/content_5732906.htm Accessed 15 March 2024

Genova F (2018) Data as a research infrastructure CDS, the Virtual Observatory, astronomy, and beyond. EPJ Web Conf 186:01001. https://doi.org/10.1051/epjconf/201818601001

Global Indigenous Data Alliance (2019) CARE Principles for Indigenous Data Governance. Available at: https://www.gida-global.org/care . Accessed 14 June 2024

Gray N, Mann RG, Morris D, Holliman M, Noddle K (2012) AstroDAbis: Annotations and cross-matches for remote catalogues. ASP Conf Ser 461:351–354. https://doi.org/10.48550/arXiv.1111.6116

Article   ADS   Google Scholar  

Gu J, Levin JS (2021) Tournament in academia: a comparative analysis of faculty evaluation systems in research universities in China and the USA. High Educ 81:897–915. https://doi.org/10.1007/s10734-020-00585-4

Guy LP, Bechtol K, Bellm E, Blum B, Graham ML, Ivezić Ž, … & Strauss M (2023) Rubin Observatory Plans for an Early Science Program. Available at: https://rtn-011.lsst.io/RTN-011.pdf Accessed 15 March 2024

Harris R, Baumann I (2015) Open data policies and satellite Earth observation. Space Policy 32:44–53. https://doi.org/10.1016/j.spacepol.2015.01.001

Heuritsch J (2023) The evaluation gap in astronomy—explained through a rational choice framework. Publications 11(2):33. https://doi.org/10.3390/publications11020033

Houtkoop BL, Chambers C, Macleod M, Bishop DVM, Nichols TE, Wagenmakers E-J (2018) Data sharing in psychology: a survey on barriers and preconditions. Adv Methods Pract Psychol Sci 1(1):70–85. https://doi.org/10.1177/2515245917751886

Huang Y, Cox AM, Sbaffi L (2021) Research data management policy and practice in Chinese university libraries. J Assoc Inf Sci Technol 72:493–506. https://doi.org/10.1002/asi.24413

Jin WY, Peng M (2021) The effects of social perception on moral judgment. Front Psychol 11:557216. https://doi.org/10.3389/fpsyg.2020.557216

Ju B, Kim Y (2019) The formation of research ethics for data sharing by biological scientists: an empirical analysis. Aslib J Inf Manag 71(5):583–600. https://doi.org/10.1108/AJIM-12-2018-0296

Kim Y, Zhang P (2015) Understanding data sharing behaviors of STEM researchers: The roles of attitudes, norms, and data repositories. Libr Inf Sci Res 37(3):189–200. https://doi.org/10.1016/j.lisr.2015.04.006

Kim Y, Stanton JM (2016) Institutional and individual factors affecting scientists’ data-sharing behaviors: a multilevel analysis. J Assoc Inf Sci Technol 67(4):776–799. https://doi.org/10.1002/asi.23424

Article   CAS   Google Scholar  

Koribalski BS (2019) Open astronomy and big data science. Proc Int Astron Union 15(S367):227–230. https://doi.org/10.1017/S1743921321000879

Kurata K, Matsubayashi M, Mine S (2017) Identifying the complex position of research data and data sharing among researchers in natural science. Sage Open 7(3):2158244017717301. https://doi.org/10.1177/21582440177173

Kurtz MJ, Eichhorn G, Accomazzi A, Grant C, Demleitner M, Murray SS (2004) Worldwide use and impact of the NASA Astrophysics Data System digital library. J Am Soc Inf Sci Technol 56(1):36–45. https://doi.org/10.1002/asi.20095

Lamprecht AL, Garcia L, Kuzak M, Martinez C, Arcila R, Martin Del Pico E, Dominguez Del Angel V, Van De Sandt S, Ison J, Martinez PA (2020) Towards FAIR principles for research software. Data Sci 3(1):37–59. https://doi.org/10.3233/DS-190026

Lee H, Reid E, Kim WG (2014) Understanding knowledge sharing in online travel communities: antecedents and the moderating effects of interaction modes. J Hospit Tour Res 38(2):222–242. https://doi.org/10.1177/1096348012451454

Lester DG, Martani A, Elger BS, Wangmo T (2021) Individual notions of fair data sharing from the perspectives of Swiss stakeholders. BMC Health Serv Res 21:1–12. https://doi.org/10.1186/s12913-021-06906-2

Li M (2021) “Nei Juan” in exam-oriented education in China. J Lit Art Stud 11(12):1028–1033. https://doi.org/10.17265/2159-5836/2021.12.015

Li C, Zhou Y, Zheng X, Zhang Z, Jiang L, Li Z, Wang P, Li J, Xu S, Wang Z (2022) Tracing the footsteps of open research data in China. Learn Publ 35:46–55. https://doi.org/10.1002/leap.1439

Liu J (2021) Data Ethics Behaviors and Norms of Researchers [Master, University of Chinese Academy of Sciences]. Available at: https://d.wanfangdata.com.cn/thesis/ChJUaGVzaXNOZXdTMjAyMzAxMTISCFkzODY0MDg4GghidjYyajZyNQ%3D%3D Accessed 11 March 2024

Pasquetto IV, Sands AE, Darch PT, Borgman CL (2016) Open Data in Scientific Settings: From Policy to Practice Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, San Jose, California, USA. https://doi.org/10.1145/2858036.2858543

Pepe A, Goodman A, Muench A, Crosas M, Erdmann C (2014) How do astronomers share data? Reliability and persistence of datasets linked in AAS publications and a qualitative study of data practices among US astronomers. PLoS One 9(8):e104798. https://doi.org/10.1371/journal.pone.0104798

Article   ADS   PubMed   PubMed Central   Google Scholar  

Popkin G (2019) Data sharing and how it can benefit your scientific career. Nature 569(7756):445–447. https://doi.org/10.1038/d41586-019-01506-x

Rebull LM (2022) Real astronomy data for anyone: explore NASA’s IRSA. Phys Teach 60(1):72–73. https://doi.org/10.1119/10.0009117

Reichman OJ, Jones MB, Schildhauer MP (2011) Challenges and opportunities of open data in ecology. Science 331(6018):703–705. https://doi.org/10.1126/science.1197962 . PMID: 21311007

Sayogo DS, Pardo TA (2013) Exploring the determinants of scientific data sharing: Understanding the motivation to publish research data. Gov Inf Q 30:S19–S31. https://doi.org/10.1016/j.giq.2012.06.011

Science Data Bank (2024) Subject distribution of dataset published in Science Data Bank Available at: https://www.scidb.cn/en/list?searchList/ordernum=1 Accessed 24 March 2024

Serwadda D, Ndebele P, Grabowski MK, Bajunirwe F, Wanyenze RK (2018) Open data sharing and the Global South—Who benefits? Science 359(6376):642–643. https://doi.org/10.1126/science.aap8395

Stamm K, Lin L, Christidis P (2017) Career stages of health service psychologists. American Psychological Association Center for Workforce, Washington, DC. Available at: https://www.apa.org/workforce/publications/15-health-service-career/ Accessed 24 March 2024

Stahlman GR (2022) From nostalgia to knowledge: considering the personal dimensions of data lifecycles. J Assoc Inf Sci Technol 73(12):1692–1705. https://doi.org/10.1002/asi.24687

Tolle KM, Tansley DSW, Hey AJ (2011) The fourth paradigm: data-intensive scientific discovery. Proc IEEE 99(8):1334–1337. https://doi.org/10.1109/JPROC.2011.2155130

Thursby JG, Haeussler C, Thursby MC, Jiang L (2018) Prepublication disclosure of scientific results: Norms, competition, and commercial orientation. Sci Adv 4(5):eaar2133. https://doi.org/10.1126/sciadv.aar2133

Tu Z, Shen J (2023) Value of open research data: a systematic evaluation framework based on multi-stakeholder survey. Libr Inf Sci Res 45(4):101269. https://doi.org/10.1016/j.lisr.2023.101269

UNESCO (2021) UNESCO Recommendation on Open Science. UNESCO General Conference. In: France. https://doi.org/10.54677/MNMH8546

UK Research and Innovation (2016) Concordat on open research data. Available at: https://www.ukri.org/wp-content/uploads/2020/10/UKRI-020920-ConcordatonOpenResearchData.pdf . Accessed 23 March 2024

van Gend T, Zuiderwijk A (2023) Open research data: a case study into institutional and infrastructural arrangements to stimulate open research data sharing and reuse. J Librariansh Inf Sci 55(3):782–797. https://doi.org/10.1177/09610006221101200

Walsh CG, Xia W, Li M, Denny JC, Harris PA, Malin BA (2018) Enabling open-science initiatives in clinical psychology and psychiatry without sacrificing patients’ privacy: current practices and future challenges. Adv Methods Pract Psychol Sci 1(1):104–114. https://doi.org/10.1177/2515245917749652

Wang S, Kinoshita S, Yokoyama HM (2024) Write your paper on the motherland? Account Res 1–3. https://doi.org/10.1080/08989621.2024.2347398

Wilkinson MD, Dumontier M, Aalbersberg IJ, Appleton G, Axton M, Baak A, Blomberg N, Boiten J-W, da Silva Santos LB, Bourne PE (2016) The FAIR Guiding Principles for scientific data management and stewardship. Sci Data 3(1):1–9. https://doi.org/10.1038/sdata.2016.18

Xu J, Chen D, He C, Zeng Y, Nicholas D, Wang Z (2020) How are the new wave of Chinese researchers shaping up in scholarly communication terms? Malays J Libr Inf Sci 25(3):49–70. https://doi.org/10.22452/mjlis.vol25no3.4

Xu W, Poole A (2023) ‘Academics without publications are just like imperial concubines without sons’: the ‘new times’ of Chinese higher education. J Educ Policy 1–18. https://doi.org/10.1080/02680939.2023.2288339

Zhang X, Reindl S, Tian H, Gou M, Song R, Zhao T, Jandrić P (2022) Open science in China: openness, economy, freedom & innovation. Educ Philos Theory 55(4):432–445. https://doi.org/10.1080/00131857.2022.2122440

Zhang L, Downs RR, Li J, Wen L, Li C (2021) A review of open research data policies and practices in China. Data Sci J. https://doi.org/10.5334/dsj-2021-003

Zuiderwijk A, Spiers H (2019) Sharing and re-using open data: a case study of motivations in astrophysics. Int J Inf Manag 49:228–241. https://doi.org/10.1016/j.ijinfomgt.2019.05.024

Zuiderwijk A, Türk BO, Brazier F (2024) Identifying the most important facilitators of open research data sharing and reuse in Epidemiology: a mixed-methods study. PloS One 19(2):e0297969. https://doi.org/10.1371/journal.pone.0297969

Article   CAS   PubMed   PubMed Central   Google Scholar  

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Acknowledgements

The authors acknowledge the support of the Beijing Municipal Social Science Foundation under Grant [No. 22ZXC008].

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National Science Library, Chinese Academy of Sciences, Beijing, China

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JL: conceptualization, methodology, data collection, formal analysis, original draft, writing, and editing. KZ: review, data collection, and editing. LG: data collection; editing. HX: conceptualization; methodology; formal analysis; writing, editing, and paper finalization.

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Correspondence to Huichuan Xia .

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This study was reviewed and approved by the Institutional Review Board of the Institute of Psychology, Chinese Academy of Sciences. All methods were carried out following the relevant guidelines and regulations. The ethical approval number of this study is H23162.

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Liu, J., Zhao, K., Gu, L. et al. To share or not to share, that is the question: a qualitative study of Chinese astronomers’ perceptions, practices, and hesitations about open data sharing. Humanit Soc Sci Commun 11 , 1063 (2024). https://doi.org/10.1057/s41599-024-03570-9

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• Published: 31 August 2024

Suggested solutions to barriers in accessing healthcare by persons with disability in Uganda: a qualitative study

• Andrew Sentoogo Ssemata 1 , 2 ,
• Tracey Smythe 3 , 4 ,
• Slivesteri Sande 1 ,
• Abdmagidu Menya 1 ,
• Shaffa Hameed 3 ,
• Peter Waiswa 5 ,
• Femke Bannink Mbazzi 1 , 3 &
• Hannah Kuper 3  

BMC Health Services Research volume  24 , Article number:  1010 ( 2024 ) Cite this article

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There are 1.3 billion people with disabilities globally, and they frequently face barriers to accessing healthcare, contributing to their worse health and higher mortality. However, little research has explored patient-reported approaches to improve healthcare for persons with disabilities. Consequently, this study aimed to explore possible solutions and recommendations to address the existing barriers to access to healthcare for persons with disabilities in rural Uganda.

We conducted 27 semi-structured interviews with individuals with various disabilities in rural Luuka district, Eastern Uganda, between September and November 2022. The participants included individuals with visual impairment ( n  = 5), physical impairment ( n  = 5), hearing impairment ( n  = 6), multiple impairments ( n  = 5), intellectual/cognitive impairment ( n  = 5), and albinism ( n  = 1). Interviews were recorded, transcribed verbatim, and thematically analysed. We categorized the solutions using the Missing Billion disability-inclusive health systems framework.

Our findings, framed within the health systems framework, revealed several critical themes. On the demand side, suggested solutions emphasized advocacy and sensitization for persons with disabilities, their communities, and caregivers about healthcare needs. Socio-economic empowerment and community-based health services were also highlighted as essential. On the supply side, participants stressed the importance of training healthcare workers on disability, facilitating dialogue and experience-sharing sessions, and employing health workers with disabilities. Additional recommendations included improving accessibility and reasonable accommodation, organizing inclusive services like special clinic days and outreaches, ensuring representation in health facility management, and establishing comprehensive rehabilitation services with affordable assistive devices.

The multifaceted solutions proposed by persons with disabilities highlight the complex challenges they face in accessing healthcare services and highlight the necessity for comprehensive, sustainable interventions. The call to action for policymakers and healthcare providers is to prioritise the incorporation of disability-inclusive practices and explore multi-dimensional approaches that foster a more inclusive healthcare environment that adequately meets the needs of persons with disabilities.

Peer Review reports

Universal health coverage (UHC) focuses on ensuring everyone has access to a full range of quality essential health services from health promotion to prevention, treatment, rehabilitation and palliative care without financial hardship [ 1 ]. Investing in primary health care (PHC) has been identified as the most effective and cost-efficient way to achieving UHC [ 2 ]. However, some people such as people with disabilities are left behind in many aspects of PHC [ 3 ]. Therefore, failure to ensure the inclusion of people with disabilities in healthcare will mean that global targets such as UHC will be difficult to achieve [ 4 , 5 , 6 ].

People with disabilities experience marginalisation and face lower life expectancy, higher rates of poverty, and reduced access to education and employment opportunities (WHO, 2022), which further limits their access to healthcare services and exacerbates their health conditions [ 7 , 8 ]. The health and wellbeing of persons with disability is further compounded by the limited resources and infrastructure in low and middle income countries (LMICs), which often lack the necessary healthcare facilities, trained healthcare professionals, and medical equipment to provide adequate healthcare services [ 9 , 10 ].

People with disabilities experience additional barriers to accessing quality healthcare services, due to inaccessible environments, under-serviced facilities and discriminatory belief systems and attitudes which may hinder their full and effective participation in society [ 11 , 12 , 13 , 14 ]. Additionally, a recent systematic review on the barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries demonstrated that attitudinal/ belief system barriers, informational barriers, and practical and logistical barriers greatly impact access to primary healthcare services for people with disabilities in LMICs [ 3 ]. These barriers deepen inequities in the quality of healthcare provided, and affects the full and equal enjoyment of all human rights and fundamental freedoms of persons with disabilities in line with the Convention on the Rights of Persons with Disabilities [ 15 ].

Although barriers to healthcare for persons with disabilities have been studied in other settings, they may not correspond to the lived experiences for persons with disabilities in rural Uganda. Understanding the barriers to accessing health care and how these barriers affect persons with disabilities is particularly important, as such knowledge can inform efforts to address these challenges [ 3 ].

There is a lack of solutions to improve access to healthcare for people with disabilities and an evaluation to know what works, to best invest the available meagre resources in order to improve the wellbeing of persons with disabilities [ 16 ]. This aligns with the findings of studies in Ghana [ 17 ] and the USA [ 18 ] underscoring the importance of incorporating recommendations from persons with disabilities in developing effective, evidence-based strategies to effectively address the barriers to healthcare access.

More importantly, identifying possible contextual solutions and recommendations from persons with disabilities is critical for the development of successful interventions aimed at improving health care access and eliminating access disparities, thereby averting further deterioration of health, wellbeing, and functionality [ 14 , 19 ]. While many studies have primarily focussed on understanding the barriers and facilitators, exploration of the possible solutions and recommendations has been under-researched [ 17 , 18 ].

However, while there are pockets of good practice and some successful interventions, they are often not widespread and frequently lack full integration of the disability perspective, typically not incorporating the viewpoints of persons with disabilities [ 20 , 21 ]. Therefore, improving access to healthcare for people with disabilities in these settings requires the examination of possible solutions and recommendations pertinent to development of comprehensive and inclusive healthcare systems that address the unique challenges faced by these populations [ 17 ].

Healthcare system in Uganda

Uganda’s healthcare system is a mixed system comprising public, private, and community-based services, managed primarily by the Ministry of Health [ 22 ]. The public sector that provides primary healthcare (first point of contact with the health system) services for the majority of the population is organized into a tiered system, ranging from national referral hospitals to regional, district, and lower level community health centres (HC IV, III, and II), each providing community-based preventive and promotive health services [ 22 , 23 ]. There are efforts to decentralize services and improve access and healthcare performance through the Uganda’s National Health Policy and Health Sector Development Plan [ 24 ], which guide the organization and delivery of health services. However, significant disparities still persist, particularly between urban and rural areas, where healthcare infrastructure is often lacking, and services are underfunded [ 25 ]. Vulnerable populations, including persons with disabilities, face additional barriers to accessing care, which are compounded by resource constraints and the uneven distribution of healthcare professionals [ 3 , 12 , 26 , 27 ]. Recent health policies and development plans aim to address these issues, but challenges remain in ensuring equitable and effective healthcare delivery across the country [ 28 ].

This study sought to explore patient-reported potential solutions and recommendations aimed at enhancing access to and delivery of primary healthcare services for people living with disabilities in rural Luuka district, Eastern Uganda. Uganda is - a low-income country in Eastern Africa with an estimated population of 45.8 million in 2021 with less than 15% of the population living in urban settings [ 29 ]. There are wide disparities in health status, underscored by major health system challenges including inaccessible and inequitable service provision to all persons at all times in both the public and private sectors [ 30 ].

Theoretical orientation

To understand the topic, we leveraged our study on the Missing Billion disability-inclusive health system framework [ 20 ]. The framework includes 4 system-level components and 5 service delivery components (2 on the demand side, 3 on the supply side) as shown in Fig.  1 . The Missing Billion disability-inclusive health system framework delineates key components essential for establishing a robust disability-inclusive healthcare system. We chose this framework because it is relevant for this context as it considers important objectives of disability-inclusive health systems that “expect, accept, and connect” people with disabilities to quality care critical for LMIC settings [ 20 , 31 ].

The Missing Billion disability-inclusive health systems framework

Study design

We conducted an exploratory qualitative study as part of the “Missing Billion” project implementation of community-based participatory approaches to improve access to healthcare for persons with disabilities in Uganda [ 26 ]. The exploratory qualitative approach [ 32 , 33 ] was used as our topic of interest is under-researched [ 17 ]. Qualitative methods are particularly well-suited to capturing the depth and complexity of individual experiences, providing rich, detailed insights that quantitative approaches might not fully capture [ 33 , 34 ]. Utilising a qualitative methodology would allow for the exploration of the perspectives and recommendations to improving access to health care for persons with disabilities [ 32 ].

Participants and setting

The study employed purposive sampling to identify people who self-identified as living with disabilities from Luuka district in Eastern Uganda, a region comprising seven sub-counties, one town council, and an approximate population of 203,500 individuals. Participants were purposively selected to represent five distinct impairment categories: physical, hearing, visual, cognitive, and multiple impairments. Recruitment methods included accessing (a) contact lists from the district’s disability focal person, (b) local disability associations, and (c) recommendations from participants involved in the study through a snowballing approach. We identified participants who were able to communicate, demonstrated the ability to give informed consent by correctly answering questions about the study; and lived in the community for more than two years. The sample was diverse in terms of participant age and type of disability. A total of 27 participants aged 18 years or older were approached and agreed to participate (Table  1 ), with only one individual declining to participate. We determined that our chosen sample size would be sufficient to achieve data saturation (point at which no new data or themes would emerge) [ 35 ]. The distribution across impairment categories (Table  1 ) was as follows: visual impairment ( n  = 5), physical impairment ( n  = 5), hearing impairment ( n  = 6), multiple impairments ( n  = 5), intellectual/cognitive impairment ( n  = 5), and albinism ( n  = 1). We selected a sample size that was large enough and encompassing various impairments to provide diverse perspectives but small enough to allow for an in-depth analysis of each participant’s experiences [ 35 ].

Data collection

Between September and November 2022, authors AS and SS, proficient in English, Lusoga, and Luganda, conducted in-depth interviews using a pilot-tested semi-structured interview guide (Supplementary file 1 ) developed by the researchers in close collaboration with an advisory group of persons with disabilities. The aim was to extract insights regarding potential solutions and recommendations for enhancing access to and provision of healthcare among individuals with disabilities in the region. The researchers (ASS and SS) experienced in disability-related qualitative research, interviewed the participants while participants with hearing impairment were interviewed by a research team member with hearing impairment supported by a sign language interpreter. Each 50–80-minute interview was audio-recorded, with fieldnotes taken by the researchers. The field notes were taken to capture observations, non-verbal cues, contextual details, immediate reflections and any other relevant information that could provide additional context to the verbal data. The interviews with participants with hearing impairment were voiced by the sign language interpreter and recorded. Data collection occurred in private locations, such as participants’ homes, community halls, or health facility compounds, chosen for comfort and confidentiality. Reasonable accommodations were provided to the participants based on their impairment such as large print information sheets, presence of a sign language interpreter, meeting the participant in their homes.

The researchers (AS and SS) held weekly debriefing meetings to compare notes, discuss emerging ideas and generate preliminary findings. This process ensured accuracy in data collection and interpretation, addressing any potential misunderstandings. These meetings continued throughout the analysis phase until data saturation was achieved.

Data management and analysis

All interview recordings were transcribed, with those conducted in Lusoga and Luganda translated into English. Transcripts were then summarized and indexed. Two researchers (ASS and SS) independently manually coded the data using MS Excel. Open coding facilitated the identification of new and evolving themes, while prominent themes raised by participants were identified. After each interview, the field notes were organized and reviewed alongside the transcribed interview data. Key observations and insights from the field notes were integrated into the analysis process to enrich our understanding of the data and to identify themes that may not have been immediately apparent from the interview transcripts alone. By incorporating the field notes into our analysis, we aimed to triangulate the data in order to produce a more nuanced and comprehensive interpretation of the findings, ensuring that our analysis and conclusions accurately reflected the experiences and perspectives of the participants. Thematic data saturation was reached through the analysis of all transcripts, ensuring exhaustion of new codes and themes [ 35 ]. Main themes were listed, and illustrative excerpts providing context from participants were reported in the results. Thematic analysis, utilizing a predetermined codebook further refined inductively from emerging themes and based on the Missing Billion disability-inclusive health systems framework [ 20 ], was employed to explore responses from persons with disabilities regarding their perspectives on solutions to improving healthcare access. Our focus was on the service delivery components of the framework. These are components that persons with disabilities in the community are very likely to reflect on rather than the system components (see Fig.  2 ). The framework was instrumental in organizing and categorizing the data during the analysis phase. We used the framework’s components as initial codes or themes, which allowed us to systematically analyse the data, identify patterns and relationships in relation to key theoretical constructs.

Rigor and trustworthiness

We employed a number of strategies to ensure rigor and trustworthiness in our study. To enhance credibility and validity of our findings, we used triangulation by collecting and analysing data from the interviews and field notes. Additionally, the authors (ASS, SS and AM) had multiple debriefing sessions to discuss emerging themes and ensure a consistent and comprehensive interpretation of the data. At these session meetings, we critically evaluated our biases and assumptions throughout various the study stages.

During purposive sampling of the participants, we considered maximum variation of the sample to include participants with different impairments to ensure relevant and rich data. We maintained the consistency of our coding by ensuring two authors coded the transcripts and any discrepancy, a third author part of the research team supported participated in the coding meetings to ensure dependability. Data collection continued until we reached data saturation, meaning no new themes or insights emerged in the later stages of analysis. We have provided a detailed account of our data collection and analysis methods, as well as a clear description of the study context and participant demographics, to enhance the transferability of our findings.

Ethics and informed consent details

The research received ethical approval from the Uganda Virus Research Institute’s ethics committee (REC ref GC/127/904) and the London School of Hygiene & Tropical Medicine ethics committee (Ref 26715). Clearance was also obtained from the Ugandan National Council of Science and Technology (Ref SS1348ES) and the Luuka district local government - district health office. Prior to any study related activities, participants were provided information sheet and consent forms in a language they were most comfortable to use (English or Lusoga – local dialect used in the study area). The researchers read and explained the study information to each participant. Participants had the privilege to ask any questions prior to consenting or during data collection. All participants provided written informed consent and for those with cognitive impairment, proxy consent was obtained in addition to guardian consent, in line with ethical guidelines.

The possible solutions and recommendations related to improving access to healthcare service were categorised based on the service delivery components rather than the system components of the Missing Billion disability-inclusive health systems framework (Fig.  2 ).

Suggested solutions and recommendations to the barriers to access to health care based on the Missing Billion disability-inclusive health systems framework proposed by the Missing Billion Initiative

AUTONOMY AND AWARENESS

People with disabilities make their own decisions about health care and are aware of their rights and options.

Advocacy and sensitizing persons with disabilities on health care

Participants stressed the need to raise awareness among people with disabilities about their healthcare rights using Village Health Teams (VHTs), healthcare workers, or community meetings. They emphasized the importance of informing them about accessing healthcare services and providing specific guidance on facility visits and service locations.

“Standing for our rights is key. We need to inform persons with disabilities about their rights. It needs sensitization of people with disability about their health , their rights when they get to the health facility. People with Albinism or those with other disabilities should be treated as human beings.” (Female, 25 years, albinism). “We must train and empower persons with disabilities to go to the health facilities when they are sick and not to sit at home and wait to die. They need to know they can also fall sick of other diseases like malaria not related to their disability and they need to go to hospital to receive treatment. I know there are those who think that a lame person like me doesn’t get sick , but we have red blood like anyone else , so advocacy and training is critical.” (Male, 50 years, Physical impairment).

Participants emphasized the importance of being empowered to advocate for themselves, boosting their confidence, assertiveness and independence in making informed decisions about their health without reliance on others.

“We must talk to people in the community , we educate and empower them on how to be involved to make informed decisions about their health or services they are supposed to get when they reach the health facility.” (Male, 40 years, visual impairment).

Additionally, participants indicated the need for peer support and mentorship in the communities and health facilities where individuals with disabilities can connect with others who have similar experiences for advice, emotional support, and encouragement to navigate the healthcare system and advocate for their needs.

Sensitization of communities and caregivers on disability

Participants recommended community and caregiver sensitization on disability to raise awareness and understanding of the unique health needs of this population. They suggested that such initiatives could reduce disability-related stigma, discrimination, and negative attitudes, while fostering inclusive and supportive environments that promote the well-being and rights of people with disabilities in accessing healthcare.

“Yes , continue to sensitize the caregivers and communities to support us and not discriminate. We need to be taken to hospital when we are ill.” (Female, 44 years, hearing impairment).

AFFORDABILITY - People with disabilities can afford to access health.

Social-economic empowerment for persons living with disabilities

Participants highlighted the need to improve their socioeconomic situation through providing opportunities, resources, and support systems to enhance their skills, access economic opportunities, and engage fully in society. They expressed confidence that economic empowerment would enable them to afford healthcare, access assistive devices, and maintain independent living.

“Our livelihood situation as people with disabilities is not a good. If am empowered to make a living , then I can get money to seek care , I am able to take care of myself the same way the person who has normal eyes is able to do. ” (Male, 40 years, visual impairment).

Participants noted that empowering persons with disabilities with financial literacy training and resources would not only enhances their financial independence but may also help them to proactively manage their health needs, make informed financial decisions, negotiate payment plans with healthcare providers and meet the costs associated with seeking healthcare.

“If I could get capital [income to invest] , I can carry out maize and coffee business as long as I have capital. This means I can generate money and not depend on others. Therefore , I am able to get what I want. Even if it is going to the health facility , I will be able to go as I will have the money.” (Female, 25 years, Multiple impairment).

Community-based health services and health saving schemes

Participants suggested that setting up community saving groups for medical and health savings to be able to continuously save small amounts on a regular basis for their health needs and support healthcare access. This would minimise on out-of-pocket cost to which many of them acknowledged not having at the time they need to seek healthcare.

“ We should encourage persons with disabilities to create community savings groups like our group is called “Twisakilala Namukube” and it meets there , (pointing across the road). I used to spend my money anyhow then I joined and started saving little by little and because my health is delicate , this saving has now helped me meet the hospital bills whenever I could fall sick , buying medicines that I needed.” (Female, 43 years, visual impairment).

Additionally, participants suggested the need for extending health services closer to their communities through community health days and integrated outreaches, encouraging home-based care services to help reduce on costly hospital visits and facilitate timely access to healthcare.

“I ask the government to bring services close to us. It will make access to health services cheaper. I don’t have to spend on transport or be forced to go to a private hospital. If they are doing community outreaches , services would be cheaper and then I don’t need to pay to go to Iganga or Jinja , it is very far for me.” (Male 50 years , visual impairment) .

Extending health services to the community was viewed as a mechanism to alleviate the financial burden due to high service and transportation costs due to the long distance to the health facilities, mitigate their inability to meet the costs associated with accessing healthcare, sparing them from resorting to private facilities that pose additional financial strain.

HUMAN RESOURCES

Health workforce is knowledgeable about disabilities and has the skills and flexibility to provide quality care.

Training healthcare workers on disability

Participants emphasized the critical need for comprehensive disability training for healthcare professionals. This training aims to augment their understanding, skills, and attitudes towards delivering inclusive and effective healthcare services for people with disabilities, thereby improving healthcare access. By educating healthcare workers on various forms of disabilities, as well as the unique needs, challenges, and rights of individuals with disabilities, this initiative seeks to foster empathy, diminish stigma, and bolster comprehension. Consequently, healthcare workers can offer personalized care that upholds the dignity and autonomy of individuals with disabilities.

“You need to reach out to the healthcare workers and train them on disability and teach them how to manage us well when we come to access healthcare. Training is key and will greatly help in inclusive healthcare.” (Female, 40 years, physical impairment).

This disability-inclusive healthcare training is anticipated by interviewees to cultivate an environment conducive to inclusive healthcare delivery.

“The healthcare workers we have do not know everything. So , if there are trainings to help them understand that there is nothing for us without us , it will change their attitude , the way they see us with disabilities and perhaps become more compassionate when providing care . (Male, 18 years, Cognitive impairment).

Equipped with enhanced skills and knowledge, healthcare workers will not only exhibit greater confidence in catering to individuals with disabilities but also minimize unnecessary referrals. This, in turn, promises to streamline healthcare delivery processes into culturally competent care, ensuring efficiency and inclusivity across the board.

“Sensitizing health workers in hospitals about disability to help improve service delivery for people with disabilities. Healthcare workers should be equipped with skills like sign language , reasonable accommodation or other key adjustments regarding issues of disabilities.” (Female, 26 years, hearing impairment).

Dialogue and experience sharing sessions

Participants also suggested the establishment of engagements sessions and discussion workshops between health workers and persons with disabilities. The purpose of these sessions would be to listen to and learn in context about the experiences and healthcare needs of persons with disabilities with the aim of addressing stigma, discrimination, stereotypes, and negative attitudes of health workers.

“First of all , most times we are left behind but if they invite us for some workshops and we are able to speak with the healthcare workers on how we feel and how we should be treated , the challenges we face , maybe it would give an opportunity for the health workers to appreciate what we go through as people who have disabilities.” (Male, 62 years, visual impairment). “Given a chance , I am able to engage in discussions and sensitize the healthcare workers very well because I know the challenges a person with disabilities experiences. You should organise that at every health facility there is a seminar led by people with disabilities to teach them [healthcare workers] on how to handle people with disabilities.” (Female, 18 years, multiple impairment).

Dialogue was seen as a mechanism to support healthcare workers to approach people living with disabilities with sensitivity, and open mindedness, ensuring that their care is delivered with the respect, and consideration.

Employing health workers with disabilities

Participants underscored the importance of inclusive recruitment strategies for healthcare workers to foster opportunities for individuals with disabilities within healthcare settings. They stressed the necessity of healthcare workers who not only comprehend the challenges and healthcare requirements of persons with disabilities, but also possess the ability to manage them with empathy and skillful care thereby improving healthcare access.

“If we have healthcare workers with disabilities , they will be an example to other health workers , will be advocates for improvements in the health system to make it more accessible and inclusive.” (Male, 34 years, physical impairment).

Integrating persons with disabilities into the healthcare workforce has the potential to enhance disability awareness among healthcare staff and cultivate a more inclusive and welcoming environment. This, in turn, is expected to encourage individuals with disabilities to seek healthcare services more regularly and confidently.

HEALTH FACILITY

Health-care services , including health-care facility infrastructure and information , are accessible for people with disabilities.

Improving accessibility and reasonable accommodation

Participants strongly advocated for improved accessibility in healthcare facilities, emphasizing the importance of ramps, rails, and accessible pathways for seamless navigation by people with disabilities. They also highlighted the urgent need for accessible restroom facilities, adjustable beds, and information in accessible formats. These measures are crucial for creating an inclusive healthcare environment, enhancing the overall healthcare experiences of individuals with disabilities, and promoting equality in healthcare access.

“Something needs to be done with our facilities to make them accessible then we can easily come for health service. They should put accessible walkways , so we pass with ease. They should have user-friendly toilets. They should bring adjustable beds , so it’s easy to get on and off.” (Female, 40 years, physical impairment). “Now most of the hospital beds are very high. We want adjustable beds at the facility so that you can crawl onto the bed independently even in my old age and then it can be adjusted for whatever procedure. This will make life easier for both the patient and the healthcare worker.” (Male, 80 years, Multiple impairment).

In addition, participants suggested that all health centers needed to be equipped with assistive devices and equipment to facilitate access and enhance the quality of care for persons with disabilities, in order for the healthcare workers to provide adequate reasonable accommodation.

Inclusive services, special clinic days and outreaches

Participants suggested the implementation of specific clinic days at health facilities as well as conducting outreaches that prioritize the needs of persons with disabilities. This was with reference to HIV special clinic days. Furthermore, these initiatives would help motivate individuals with disabilities to seek medical care promptly when they are unwell, ensuring dependable and accessible healthcare for this population.

“What is important is to create priority lines so receive healthcare easily and fast. This also reduces on the time you and the person who has left their work to escort you leave early or make special days for us to get dedicated care. That will make service delivery better.” (Male, 37 years, Hearing impairment).

Participants proposed creation of necessary accommodations within the broader healthcare system that make the service delivery more accessible and efficient for them rather than isolating care for persons with disabilities.

“ The way we are interested in inclusive service delivery , we can’t say that let us have separate health facilities specifically for people living with disabilities , that’s not possible apart from us having special clinic days where we are given priority like it is done for HIV or TB or diabetes - they have special days to pick medication from the health facilities. The same can be done for persons with disabilities.” (Female, 43 years, visual impairment).

In addition, some participants recommended creating dedicated departments with trained staff at health facilities that solely offer services to people with disabilities.

“Am asking the government to consider us who have disabilities and add more resources at the hospitals for us with disabilities like special departments with trained staff so that I do not have to wait in the long lines. As am crawling in the line , it may not be easy for a doctor to see me , or I may be run over.” (Female, 45 years, physical impairment).

Others suggested that the establishment of patient navigation services, scheduling appointments and prioritizing them when they visit health facilities would improve their service experience. Some recommended that health facilities should designate disability focal persons to monitor people with disabilities and make sure they receive timely and appropriate care.

“They should be able to know that they have people who have disabilities of such a category or those who are in such a condition , if that person reaches , he will want to be attended to in a special way quickly , you never know you may be taking it lightly and it continues to hurt him. But for us , a person sees you who is holding the baby and he does not see the child , so he continues taking you in a normal way yet when she gets sick , she gets into critical conditions.” (Female, 20 years, cognitive impairment).

Inclusion and representation on the health facility management committees

Participants indicated that including people with disabilities on health facility management committees, would promote equal participation in service delivery, decision making processes, contributing to more inclusive and representative healthcare delivery practices.

“A person with a disability should be included on the health facility committee. That is the only way we can be helped , and our voice be heard.” (Male, 34 years, physical impairment).

Such inclusion was seen as an opportunity to facilitate advocacy for the necessary services required by people with disabilities, promote disability awareness, advocate for policy changes, and improve community-based healthcare services.

REHABILITATION AND ASSISTIVE TECHNOLOGY

quality rehabilitation and health services are available.

Establishment of comprehensive rehabilitation services

Participants recommended the setup of rehabilitation services at the health facilities where they can be referred for extensive specialist care including physical therapy, occupational therapy, speech therapy, and psychological support, directly impacting their access to healthcare services. Although participants acknowledged the high costs of these services, the establishment at lower health facilities would minimise on the long distances and costly travel expenses to seek the services elsewhere.

“we need to promote or invest more in rehabilitation health system , so we have some rehabilitation done at least at the health centre IIIs in our district. So , besides training healthcare workers there can be a way government can organize routine visits for the health workers to visit rehabilitation centres where they can see what takes place there maybe it will help them gain. (Male , 30 years Multiple impairment)

On the other hand, participants recommended having a streamlined system for connecting persons with disabilities from the primary health care facilities to the more specialist services.

Making assistive devices accessible and affordable

People with disabilities strongly emphasized the need for affordable availability of assistive devices such as wheelchairs, hearing aids, glasses, and memory aids. Participants expressed concern that the assistive equipment is prohibitively expensive for individuals with impairments and not readily accessible in the local market. As a result, individuals who require such devices must travel outside of their district to obtain them. The provision of assistive devices at affordable prices would significantly enhance the mobility and independence of people with impairments, thereby improving their overall access to healthcare services.

“Of course , I will talk about transport from home to the facility. Maybe I have this wheelchair , but maybe it’s not the type that I would have loved to have. I may need to have the tricycle because that one would be easy for me to get to the facility. Also , these assistive devices for the Persons with disabilities are expensive. Just look at this wheelchair , it costs UGX 2 million (approx. $530) just a wheelchair yet , it my legs , it is the one I have to use , when you look at the blind , the white cane , you see it very small but it is UGX 360 , 000 (approx. $96) so things are very expensive. So , if the assistive devices are subsidized , it would be easy for us to reach the healthcare service points.” (Female, 40 years, physical impairment).

This study aimed to explore the solutions and recommendations proposed by persons with disabilities in Luuka district, Eastern Uganda, to improve access to healthcare. The analysis identified key solutions related to both reaching (autonomy and awareness, affordability) and receiving care (human resources, health facilities, rehabilitation and assistive technology), encompassing various domains. Firstly, autonomy and awareness are emphasised through advocacy, empowerment, and sensitisation efforts, including informing people about their rights and involving them in decision-making processes. Secondly, affordability is addressed through socio-economic empowerment initiatives, community-based health services, and health saving schemes to minimise financial barriers. Thirdly, enhancing human resources involves training healthcare workers on disability, facilitating dialogue sessions between healthcare workers and persons with disabilities, and advocating for the employment of healthcare workers with disabilities. Fourthly, improvements in health facility infrastructure and services are proposed, including enhancing accessibility and reasonable accommodation measures, implementing inclusive services and special clinic days, and establishing patient navigation services. Finally, addressing rehabilitation and assistive technology needs entails establishing comprehensive rehabilitation services and ensuring the affordability and accessibility of assistive devices. These multifaceted solutions proposed by persons with disabilities aim to address the complex challenges that they face in accessing healthcare services, promoting inclusivity, autonomy, and affordability.

These findings are important to help guide the development and implementation of programmes and policies to improve access to healthcare for people with disabilities. These are important, as a vast body of evidence shows that people with disabilities frequently experience poor health and a range of barriers in accessing services, including evidence from Uganda [ 3 , 7 , 8 , 36 , 37 ]. Comprehensive analyses from LMICs shows that that the health system is failing to include people with disabilities and the range of interventions to improve the health of people with disabilities in LMICs is targeted at individuals, rather than systemic changes [ 16 ].

Our study adds to the understanding of how these potential solutions and recommendations for improving healthcare access can be developed, particularly in low-income settings like Uganda in three substantive ways. We used a qualitative approach and directly engaged persons with disabilities, and so the study provides nuanced insights into their experiences and fundamental changes needed regarding healthcare access [ 33 , 34 ]. This firsthand perspective is invaluable for addressing context-specific barriers and tailoring interventions accordingly. Moreover, the study’s focus on community-based participatory approaches underscores the importance of grassroots involvement in designing and implementing solutions [ 38 , 39 ]. This is particularly relevant in resource-constrained settings where top-down approaches may be less effective, but also aligns with the disability movement slogan of “Nothing about us, Without us” [ 39 ]. A twin-track approach actively involving persons with disabilities that focusses on mainstreaming disability, tailored and targeting people with disabilities is required in implementation of interventions and solutions that address the barriers to healthcare access for persons with disabilities [ 27 ]. The study also highlights the importance of addressing not only physical accessibility but also socio-economic factors such as empowerment, financial literacy, and social support networks in enhancing healthcare access for people with disabilities. This holistic approach acknowledges the multifaceted nature of barriers to healthcare and emphasizes the need for comprehensive, sustainable interventions.

We note that participants suggested creation of special clinic days that may improve access, provide dedicated time and resources tailored to their specific needs, offer specialized services and reasonable accommodations to better meet the needs of persons with disabilities. However, we acknowledge that this approach may have negative consequences such as unintentionally reinforcing segregation rather than integrating them into mainstream healthcare services, stigmatization or marginalization if they are only able to access healthcare services on designated special clinic days, rather than being able to access services every day. The special clinic days may also require designating additional resources and staffing, which could divert resources away from efforts to make healthcare services universally accessible and inclusive on all days.

Strengths and limitations of study

The strengths of our study include the first qualitative exploration of solutions and recommendations to healthcare access improvement in rural Uganda. We interviewed participants with various impairments representative of the disabilities people experience. However, their suggestions may not always be practical or applicable - such as training all healthcare workers on sign language. Therefore, their views must be balanced by other pieces of evidence and triangulated with data from other stakeholders. The qualitative methodology enabled a detailed exploration of perspectives of persons with disabilities. Some of the data were collected by person with disability which aided effective data collection. The utilisation of the service delivery components of the Missing Billion disability-inclusive health systems framework [ 20 ] to guide study that includes consideration from both the demand and supply side provided a comprehensive understanding of the topic. The framework supports a structured approach to assessing the holistic inclusion of persons with disabilities into the health system, leveraging on key indicators related to different components. The limitations of this study include the rural setting, which may not reflect and differ from perspectives of participants from an urban cosmopolitan setting. The participants suggested possible solutions and recommendations that may need other factors in combination to cause improvement in healthcare access for persons with disabilities. Participants were representative of one district. However, as they were with various impairments and recruited using several strategies, they may inform overall perspectives of persons with disabilities in a rural setting. As participants were purposively selected, there is a possible influence of social desirability bias on participant responses.

Implications: research, service provision

The findings from our study suggest the need for future studies to explore possible solutions and recommendations in other regions of Uganda or similar low-income settings. Additionally, there is a need for research to develop, test and implement interventions in addressing the barriers to healthcare access. There is not one “magic bullet” to overcome the barriers to healthcare faced by people with disabilities, and so we recommend that studies should explore multi-dimensional approaches. Our study suggests valuable insights for policy makers and program implementers, emphasising the significance of integrating disability-inclusive practices into healthcare service delivery, such as adapting health facilities and training healthcare personnel, to promote health equity for individuals with disabilities. Additionally, we advocate for resource allocation and support for legislation that protects the rights of persons with disabilities towards improving accessibility and affordability of healthcare services.

This study underscores the imperative of integrating disability-inclusive practices into healthcare service delivery to ensure health equity for persons with disabilities. The multifaceted solutions proposed by persons with disabilities highlight the complex challenges they face in accessing healthcare services and emphasise the need for comprehensive, sustainable interventions. Moving forward, there is a call to action for policymakers and healthcare providers to prioritise the incorporation of disability-inclusive practices, allocate resources, support legislation protecting the rights of persons with disabilities, and explore multi-dimensional approaches to overcome barriers to healthcare access.

Data availability

The data analysed during the current study are provided within the manuscript. The transcripts and codebook are not publicly available due to the potential for identifying individual participants.

World Health Organization. Tracking universal health coverage. Geneva: World Health Organisation; 2015.

Google Scholar  

Nunes R, Nunes SB, Rego G. Health care as a universal right. Z Gesundh Wiss. 2017;25(1):1–9.

Article   PubMed   Google Scholar  

Hashemi G, Wickenden M, Bright T, Kuper H. Barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries, a Meta-synthesis of qualitative studies. Disabil Rehabil. 2022;44(8):1207–20.

Kuper H, Hanefeld J. Debate: can we achieve universal health coverage without a focus on disability? BMC Health Serv Res. 2018;18(1):738.

Article   PubMed   PubMed Central   Google Scholar  

The Lancet. Prioritising disability in universal health coverage. Lancet. 2019;394(10194):187.

Article   CAS   PubMed   Google Scholar  

Soltani S, Takian A, Akbari Sari A, Majdzadeh R, Kamali M. Financial Barriers to Access to Health Services for Adult People with disability in Iran: the challenges for Universal Health Coverage. Iran J Public Health. 2019;48(3):508–15.

PubMed   PubMed Central   Google Scholar  

World Health Organization. Global report on health equity for persons with disabilities. Geneva: World Health Organization,; 2022.

The Lancet Public Health. Disability-a neglected issue in public health. Lancet Public Health. 2021;6(6):e346.

Kaur G, Prinja S, Lakshmi PVM, Downey L, Sharma D, Teerawattananon Y. Criteria used for Priority-setting for Public Health Resource Allocation in Low- and Middle-Income countries: a systematic review. Int J Technol Assess Health Care. 2019;35(6):474–83.

Lane H, Sarkies M, Martin J, Haines T. Equity in healthcare resource allocation decision making: a systematic review. Soc Sci Med. 2017;175:11–27.

Gudlavalleti VSM. Challenges in Accessing Health Care for people with disability in the south Asian context: a review. Int J Environ Res Public Health. 2018;15(11):2366.

Eide AH, Mannan H, Khogali M, van Rooy G, Swartz L, Munthali A, et al. Perceived Barriers for Accessing Health Services among individuals with disability in four African countries. PLoS ONE. 2015;10(5):e0125915.

Smythe T, Mabhena T, Murahwi S, Kujinga T, Kuper H, Rusakaniko S. A path toward disability-inclusive health in Zimbabwe Part 2: a qualitative study on the national response to COVID-19. Afr J Disabil. 2022;11:991.

Peterson-Besse JJ, Walsh ES, Horner-Johnson W, Goode TD, Wheeler B. Barriers to health care among people with disabilities who are members of underserved racial/ethnic groups: a scoping review of the literature. Med Care. 2014;52(10 Suppl 3):S51–63.

Della Fina V, Cera R, Palmisano G. The United Nations convention on the rights of persons with disabilities: a commentary. Springer; 2017.

Saran A, White H, Kuper H. Evidence and gap map of studies assessing the effectiveness of interventions for people with disabilities in low-and middle-income countries. Campbell Syst Rev. 2020;16(1):e1070.

Dassah E, Aldersey HM, McColl MA, Davison C. Health care providers’ and persons with disabilities’ recommendations for improving access to primary health care services in rural northern Ghana: a qualitative study. PLoS ONE. 2022;17(9):e0274163.

Article   CAS   PubMed   PubMed Central   Google Scholar  

McClintock HF, Kurichi JE, Barg FK, Krueger A, Colletti PM, Wearing KA, et al. Health care access and quality for persons with disability: patient and provider recommendations. Disabil Health J. 2018;11(3):382–9.

Brown AF, Ma GX, Miranda J, Eng E, Castille D, Brockie T, et al. Structural Interventions to Reduce and Eliminate Health Disparities. Am J Public Health. 2019;109(S1):S72–8.

The Missing Billion Initiative and Clinton Health Access Initiative. Reimagining health systems that expect, accept and connect 1 billion people with disabilities. 2022.

The Missing Billion Initiative. Compendium of good practice examples to improve health services for people with disabilities 2020–2023: The Missing Billion Initiative. 2024 [ https://www.themissingbillion.org/good-practices

Ministry of Health. Hospitals Kampala: Uganda Ministry of Health. 2024 [ https://www.health.go.ug/hospitals/

Turyamureba M, Yawe B, Oryema JB. Health Care Delivery System in Uganda: a review. Tanzan J Health Res. 2023;24(2):57–64.

Ministry of Health. The Ministry of Health Strategic Plan 2020/21–2024/25 Kampala. Uganda Ministry of Health,; 2021.

Kim J-H, Bell GA, Bitton A, Desai EV, Hirschhorn LR, Makumbi F, et al. Health facility management and primary health care performance in Uganda. BMC Health Serv Res. 2022;22(1):275.

Kuper H, Ssemata AS, Smythe T, Drazdzewska J, Waiswa P, Kagurusi P, et al. Is it feasible to implement a community-based participatory group programme to address issues of access to healthcare for people with disabilities in Luuka district Uganda? A study protocol for a mixed-methods pilot study. BMJ Open. 2023;13(9):e074217.

UNICEF. Inclusion of children and young people with disabilities in routine general health care. A practice guide. Norway: Norway-UNICEF Disability Partnership Framework; 2022. August 2022.

Mijumbi-Deve R, Kawooya I, Nankya E, Sewankambo N. Primary health care systems (PRIMASYS): case study from Uganda. Geneva: World Health Organization; 2017.

The World Bank. Population total - Uganda, Washington DC. The World Bank,; 2022 [ https://data.worldbank.org/indicator/SP.POP.TOTL?locations=UG

World Health Organization. Uganda - Country cooperation strategy Geneva, Switzerland: World Health Organization. 2018 [ https://apps.who.int/iris/bitstream/handle/10665/136975/ccsbrief_uga_en.pdf

Harrison JAK, Thomson R, Banda HT, Mbera GB, Gregorius S, Stenberg B, et al. Access to health care for people with disabilities in rural Malawi: what are the barriers? BMC Public Health. 2020;20(1):833.

Busetto L, Wick W, Gumbinger C. How to use and assess qualitative research methods. Neurol Res Pract. 2020;2:14.

Kielmann K. Introduction to qualitative research methodology: a training manual. Norwich: University of East Anglia; 2012. p. NR4.

Tomaszewski LE, Zarestky J, Gonzalez E. Planning qualitative research: design and decision making for New Researchers. Int J Qualitative Methods. 2020;19:1609406920967174.

Article   Google Scholar  

Naeem M, Ozuem W, Howell K, Ranfagni S. Demystification and actualisation of data saturation in qualitative research through thematic analysis. Int J Qualitative Methods. 2024;23:16094069241229777.

Casebolt MT. Barriers to reproductive health services for women with disability in low- and middle-income countries: a review of the literature. Sex Reproductive Healthc. 2020;24:100485.

Schenk KD, Tun W, Sheehy M, Okal J, Kuffour E, Moono G, et al. Even the fowl has feelings: access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia. Disabil Rehabil. 2020;42(3):335–48.

Benz C, Scott-Jeffs W, McKercher KA, Welsh M, Norman R, Hendrie D, et al. Community-based participatory-research through co-design: supporting collaboration from all sides of disability. Res Involv Engagem. 2024;10(1):47.

Kuper H, Hameed S, Reichenberger V, Scherer N, Wilbur J, Zuurmond M et al. Participatory Research in disability in low- and Middle-Income countries: what have we Learnt and what should we do? Scandinavian J Disabil Res. 2021.

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Acknowledgements

The authors wish to acknowledge the study participants and the assistance provided by the District health office.

This work was supported by the National Institute for Health and Care Research (NIHR) professorship grant award to HK - Grant number NIHR301621.

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Andrew Sentoogo Ssemata, Slivesteri Sande, Abdmagidu Menya & Femke Bannink Mbazzi

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Tracey Smythe, Shaffa Hameed, Femke Bannink Mbazzi & Hannah Kuper

Division of Physiotherapy, Department of Health and Rehabilitation Sciences, Stellenbosch University, Cape Town, South Africa

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School of Public Health, College of Health Sciences, Makerere University, Kampala, Uganda

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The study concept and design were conceived by HK, TS, ASS, FBM, SH and PW. Data was collected by ASS and SS. Analysis was performed by ASS, SS, AM supported by FBM. ASS, TS prepared the first draft of the manuscript. All authors provided edits and critiqued the manuscript for intellectual content.

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Correspondence to Andrew Sentoogo Ssemata .

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Ethics approval for this study was provided by the Uganda Virus Research Institute’s ethics committee (Ref GC/127/904); the London School of Hygiene & Tropical Medicine ethics committee (Ref 26715) and the Ugandan National Council of Science and Technology (Ref SS1348ES). All participants provided written informed consent to participate in the study.

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Ssemata, A.S., Smythe, T., Sande, S. et al. Suggested solutions to barriers in accessing healthcare by persons with disability in Uganda: a qualitative study. BMC Health Serv Res 24 , 1010 (2024). https://doi.org/10.1186/s12913-024-11448-4

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Received : 29 May 2024

Accepted : 16 August 2024

Published : 31 August 2024

DOI : https://doi.org/10.1186/s12913-024-11448-4

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